The gaining and effects of legitimacy gaining on organizations operating outside industry norms.

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Master Thesis

The gaining and effects of legitimacy

gaining on organizations operating outside

industry norms.

Michael Prendergast S3558193

Thesis Supervisor: Dr. Olga Belousova

Co-Assessor: Dr. Michael Wyrwich

University of Groningen, Faculty of Economics & Business MSc Business

Administration

Small Business & Entrepreneurship

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Abstract

This thesis aims to deliver a contribution to legitimacy theory with regard to the gaining and effects of legitimacy gaining by organizations operating outside of industry norms. We looked at how organizations operating outside of industry norms obtain moral legitimacy through legitimacy-building activities. We also examine how moral legitimacy gained through these actions and activities can create conflicts in relation to the organization’s overall performance.

A recent study by Zuzul et al. (2017) pointed out that we don’t yet know enough about the negative effects of legitimacy building. Based on the existing literature on legitimacy, a research gap was identified and translated into a research question. To provide insights and to answer the research questions a longitudinal case study approach was used. This case study follows an organization operating across multiple institutional logics from start-up to present. From the analysis of the case study, we present our findings on the gaining of legitimacy across multiple logics. In addition, we found that organizations operating across institutional boundaries experience negative effects as a result of legitimacy gaining. These negative effects occur from attentional constraints relating to legitimation activities and goal conflicts with stakeholders from different institutional settings.

As a contribution to theory, propositions were developed regarding the most effective measures for gaining moral legitimacy across institutional logics. Secondly, the relationship between legitimacy gaining and the performance of the organization was examined, leading to propositions concerning the negative effects of employing multiple legitimacy building activities on organizational performance. Finally, as a contribution to the practical domain alternative, managerial approaches are presented to assist organizations operating outside of industry norms to gain acceptance and build legitimacy.

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Acknowledgments

Before starting I would like to give thanks to the people without their help this paper would not have been possible. Firstly, I would like to give thanks to Jill Wood and Sean Ekins for taking the time to be interviewed by me and for giving interesting insights into the impressive journey they have undertaken. Secondly, I would like to give special thanks to my wonderful girlfriend Clara Pougeard, and my Dad, Mike Prendergast, for the invaluable assistance they have given me.

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Glossary

Jonah’s Just Begun JJB

Sanfilippo Syndrome MPS III

Sanfilippo type C MPS IIIC

National Institutes of Health NIH

Food and Drug Administration FDA

Institutional Review Board IRB

Small Business Innovation Research SBIR

Small Business Technology Transfer SBTT

Venture Capitalists VC

Food and Drug Administration FDA

Helping Advance Neurodegenerative Disease Science HANDS

Lysosomal Disease Network LDN

New York University Hospital NYU

Magnetic Resonance Imaging MRI

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Introduction

New firms have abysmally low probabilities of survival (Headd, 2001). When entrepreneurs establish a new business, they face many difficulties in their attempts to survive, these include the need to secure capital, attract and recruit key staff, put in-place operational systems, provide a product or service, build a market presence, establish credibility, etc. According to Stinchombe & March (1965), young organizations face higher risks of failure than old and established organizations. They refer to this as their liability of newness. The gaining of legitimacy and the ability to attract resources has been shown to enable new organizations to overcome this liability of newness (Delmar & Shane, 2004; Tornikoski & Newbert, 2007). Legitimacy is considered by Zimmerman & Zeitz, (2002) as a necessary condition to receive human, financial, intellectual and other resources. (Singaram, 2016) claims that with sufficient legitimacy an organization is able to acquire the means to survive the start-up phase and allow for further growth.

One of the key issues new firms’ organizations face is how to establish their legitimacy or right to exist in a given market (Ahlstrom & Bruton, 2001). Legitimacy is endowed upon the organization by its immediate audience. To gain legitimacy, new ventures may mimic the structures and ceremonies of established organizations in their field (Khaire, 2010). Conformity is deemed to be required because stakeholders are uncomfortable dealing with a firm that seems “too far out” (Khaire 2010, p.171) relative to the industry norms. Therefore, we look at how organizations operating outside of these industry norms, gain legitimacy.

Social enterprises can be seen as examples of organizations that operate outside of standard industry norms. The reasons for this relate to the hybrid commercial and social impact natures of social enterprises. A central feature of hybrid organizations is that they span institutional boundaries (Brandsen and Karré 2011). Institutional boundaries, being the institutional frameworks developed by a social system of actors that restricts membership and governs the actors' interactions (Laudel & Gläser, 1998). Within each institutional boundary different logics exist, these are referred to as being socially constructed, historical patterns of material practices, values, beliefs, and rules that govern actors within a specific institutional boundary (Thornton & Ocasio, 1999).

Prior research treats legitimation as a valuable outcome (e.g., Aldrich & Fiol, 1994; Khaire, 2010; Navis & Glynn, 2010). However, literature from (Singaram, 2016; Zuzul & Edmondson, 2017) suggested that more studies are needed on the negative effects of legitimation since the current body of literature is heavily slanted towards the positive effects. As a result of this heavily positive view further research on the negative effects of gaining legitimacy is crucial. This is especially seen as the case when the organization is operating outside of the existing market norms and laws. Therefore, in response to the demands from Singaram (2016); Zuzul and Edmondson (2017), this paper looks at the possible negative effects that the legitimation gaining has on these organizations.

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They were forced into action by the diagnosis of their son Jonah with the as yet untreatable and terminal rare disease Sanfilippo. Rare diseases are diseases that affect fewer than 200,000 people (Aronson, 2006). Parents personally taking action to search for treatments is a growing occurrence in the orphan and rare disease drug development sector (Wood, Sames, Moore & Ekins, 2013). Now nine years later they have achieved each of the social goals that they have set out with and are continuing the search for commercial partnerships in order to take their work to further trials and commercialization. The development of drugs for these diseases is not commercially justifiable for large pharmaceutical companies (Aronson, 2006). This paper examines how Jonah’s Just Begun (JJB)/Phoenix Nest sought and gained acceptance across the different institutional logics in which it operates.

To gain acceptance and overcome a lack of clarity and to convince skeptical stakeholders, new enterprises must engage in legitimacy building activities. Several studies have outlined activities that entrepreneurs can implement to build legitimacy (Zuzul & Edmondson, 2017). These include activities such as participating in industry events (Rindova, Petkova & Kotha, 2007) and affiliating with prominent partners (Sine, David & Mitsuhashi, 2007). However, these studies do not focus on organizations operating outside of industry norms and across multiple logics. In the rare and orphan disease sector, where parents are taking actions themselves, they are operating from a starting point of no experience and operate outside of any standard industry norm. Therefore, in this study, we look at how these nonconforming organizations gain legitimacy.

With due consideration, managers of these enterprises will be better equipped to concentrate on the survival and development of their organizations. However, there is still an absence of data and critical analysis of the potential negative effects of different legitimacy building activities. The lack of clarity regarding the negative effects of engaging in legitimation building activities can mean that new ventures are adversely affected in other aspects of their business growth and survival (Zuzul & Edmondson, 2017). In response to this, we will propose managerial implications and suggestions of how best to gain legitimacy whilst operating across institutional boundaries as a nonconforming organization. The overall research questions of this paper are as follows.

● How do organizations operating across institutional logics gain moral legitimacy?

● How does the gaining of this moral legitimacy affect organizational performance?

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Theoretical background

Institutional Logics

Institutional logics are socially constructed, historical patterns, assumptions, values, beliefs, and rules for organizations within any given environment (Thornton & Ocasio, 1999). These establish the rules for organizations to follow. For new organizations, institutional logics are the overarching sets of principles that guide the organization. They prescribe how the organization should behave in order to succeed and be deemed appropriate (Thornton, 2004). Therefore, institutional logics form the basis for reasoning by determining which activities are seen as desirable and legitimate within a given environment.

Organizational fields often have institutional logic pluralism to some extent. However, one logic is usually prevalent over the others (Reay & Hinings, 2009). This prevailing institutional logic creates the basis for what is seen as valuable and desirable within the institutional boundary (Thornton, Ocasio & Lounsbury, 2012). The presence of multiple logics within organizations can be commonly seen across a wide variety of fields. These include the fields of social enterprise (Dacin, Dacin, & Tracey, 2011), the health-care field (Dunn & Jones, 2010), and across the life sciences field (Murray, 2010).

Hybrids

Hybrids are organizations that harbor multiple institutional logics (Mangen, & Brivot, 2014). In the organization and management literature, the term has been used to describe organizations that operate across institutional boundaries (Brandsen and Karré 2011; Jay 2013; Pache and Santos 2012;). By operating across institutional boundaries, hybrids operate across different logics, each of these provide different sets of guidelines for action.

A social enterprise can be seen as a prime example of a hybrid organizational form (Pache and Santos, 2012; Battilana and Lee, 2014). Social entrepreneurial ventures are organizations that are driven by social value creation rather than value capture. Social enterprises pursue the dual mission of achieving both financial sustainability and social impact (Doherty, Haugh, and Lyon 2014). These social enterprises should balance their dual missions in order not to become a solely commercial organization operating with just the commercial market logic. This commercial market logic encompasses the norms, values, and goals of efficiency, profits, and market status within a commercial institutional boundary (Jaskiewicz, Heinrichs, Rau & Reay, 2015). Alternatively, a focus towards social logic goals leads to activist organizations operating without consideration of the commercial market logic. By spanning the boundaries of the private, public and non‐profit sectors, social enterprises bridge institutional fields (Dacin, & Tracey, 2011). This means that they operate across multiple organizational fields and, as a result, face multiple institutional logics. Operating across institutional fields and having dual goals leads to social organizations facing multiple institutional logics.

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between medical professionals operating with professionalism logic and business logic in Canadian health care organization.

Organizations in institutionally pluralistic fields must learn to cope with the demands of the conflicting institutional logics and create strategies and practices that balance these logics (Battilana & Dorado, 2010; Pache & Santos, 2013). In order to avoid conflicts, Meyer and Rowan in their (1977) paper argue that organizations within an organizational field may conform to the industry rules and requirements, not necessarily for reasons of efficiency, but rather for increasing their legitimacy, resources, and survival capabilities.

Hybridity enables social organizations to seek and attain legitimacy across their multiple and often conflicting institutional referents (Kraatz & Block, 2008). This creates difficulties as treating one or the other logic as dominant within the social enterprise will impede the organization's ability to gain and maintain legitimacy with the contrasting logic. Social enterprises, on one hand, need to gain legitimacy from the social impact sector in order to obtain grants and donations. But on the other hand, require legitimacy from the commercial market in order to obtain financial capital (Busco, Giovannoni, & Riccaboni, 2017). Therefore, conformity to a single institutional logic may not always be possible when organizations operate across multiple institutional logics.

Legitimacy

Legitimacy is a field that has experienced a lot of interest from researchers over the past few decades. Legitimacy is considered as “Implied congruence with the cultural environment, with the norms of acceptable behavior in the larger social system” (Dowling & Pfeffer, 1975, p.122). This was adapted to the definition “acceptance of an organization by its environment” (Kostova & Zaheer, 1999, p.64). However, the definition given by (Suchman, 1995) is considered the most definitive definition given for legitimacy, as it regards actions to be appropriate when accepted by the organization's stakeholders within a certain environment. This definition is often cited as it explicitly acknowledges the role of the audience. This is important when looking at organizations such as social enterprises that operate across multiple audiences. For these reasons in this paper, we follow this definition of legitimacy as “A generalized perception or assumption that the actions of an entity are desirable, proper or appropriate within some socially constructed system of norms, values, beliefs, and definitions” (Suchman, 1995, p.574).

Suchman (1995) further divided legitimacy into three sub-types, where each type rests on somewhat different behavioral dynamics. These three legitimacy types are (i) pragmatic legitimacy, determined through how stakeholders perceive the direct exchange between them and an enterprise (ii) moral legitimacy, also known as normative legitimacy which is defined by normative approval of a firm's actions by and for society and (iii) cognitive legitimacy, caused by the appropriateness and comprehensibility of a firm's actions (Suchman, 1995).

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is usually seen as providing a service to the public and their stakeholders, therefore their actions being seen as valuable and right is most important for social and not-for-profit organizations. Research from Dart (2004) stated that moral legitimacy further offers value to examine and provide insights into the emergence and development of social organizations. Commercial organizations can follow approved templates of behavior such as following registration guidelines and writing business plans. (Delmar & Shane, 2004). However, Singaram (2016) states that for social enterprises the activities that confer legitimacy are unclear. For these reasons, moral legitimacy, was chosen as the most appropriate to study social organizations operating across multiple logics.

Moral Legitimacy

Moral legitimacy is legitimacy that is grounded in positive normative evaluations of moral propriety (Suchman, 1995). Suchman in his (1995) paper states that moral legitimacy rests not on judgments about whether a given activity benefits the evaluator, but rather on judgments about whether the activity is, "the right thing to do" (Suchman 1965, p.579). Moral legitimacy legitimation refers to the process by which the audience of the organization accepts the venture as appropriate and right, given the existing norms and laws (Aldrich & Fiol, 1994). As shown by Suchman (1995) moral legitimacy manifests from;

(i) Structural legitimacy deals with evaluations of the categories and structure of the organization

(ii) Personal legitimacy refers to the evaluations of leaders and representatives of the organization

(iii) Procedural legitimacy refers to the evaluation of techniques and procedures adopted by the organization

(iv) Consequential legitimacy refers to evaluations of organizational outputs and consequences

These manifestations of moral legitimacy are imparted by the audience with which the organization operates. This audience involves the stakeholders with which the organization operates. Stakeholders refer to the groups or individuals who affect or are affected by the organization (Freeman, 1984). These stakeholders operate within institutional boundaries and in doing so, this forms their opinions of what is normative behavior. The audience of the organization accords moral legitimacy to new ventures when they perceive its activities as being the “right things to do” (Singaram, 2016). These stakeholders are seen as being dynamic. As the organization grows and operates across different logics it interacts with different stakeholders.

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specific path, thereby distorting the organization's willingness to explore other alternative methods. Therefore, a focus on inappropriate legitimacy strategies and activities may compromise the development of the organization over time. However, it remains to be seen how best for organizations that do not conform to a specific organizational field to acquire legitimacy. Legitimacy is a crucial organizational resource for an enterprise since it has been shown that resources flow to the enterprise as a result of its legitimacy, this in turn adds to the legitimacy of the firm (Zimmerman & Zeitz, 2002). The different ways of gaining moral legitimacy are outlined below.

Structural legitimacy comes from the categories and structures of the organization (Suchman, 1995). It can be related to the organizational form to clarify with whom the organization will compete with and from whom it will draw its support (Suchman, 1995). According to (Baur & Palazzo, 2011) different structural criteria can be used for evaluating structural legitimacy, these include formal registration with governments or international organizations, democratic structures, Affiliations and partnerships, and business identity. (Singaram, 2016) elaborates on these findings by showing that the embracing of the business identity is also an effective way of gaining structural legitimacy.

Personal legitimacy is gained from positive evaluations of leaders and representatives of the organization according to (Suchman, 1995). (Singaram, 2016) states that social enterprises can gain personal legitimacy from the founders and their commitment to social change. He further describes activities that can lead to personal legitimacy such as, founder ethos, motivations, awards, and positive media exposure. The social organization is developed to make a social impact change, the closer the ethos relate to this social change the more the entrepreneur is seen as an inspirational figure.

Procedural legitimacy comes from evaluations of techniques and procedures adopted by the organization (Suchman, 1995). It is acquired by organizations by using the right governance means to achieve the intended outcomes. According to (Suchman, 1995), it is also necessary that outcomes result from approved techniques and procedures. For organizations operating across multiple environments, the approved procedures for each environment must be used. Procedural legitimacy comes not from the outputs of the organization, but from how these are achieved.

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Legitimacy conflicts in a social enterprise context

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Methodology

This study aims to contribute to the field of Legitimacy theory by focusing on the moral legitimacy gaining of social enterprises that operate outside of industry norms and the possible negative effects they may experience as a result.

There is a challenge to gain insights into how these unconventional organizations gain legitimacy within their fields of activity and how the gaining of legitimacy can lead to potential difficulties for the organization.

To gain insight, a longitudinal research design is adopted, analyzing data from the extensive multiple studies and various other sources including publications, company reports, previous interviews, website content and a personal blog documenting the entire history of the case from the perspective of the founder Mrs. Jill Wood. The extensive data sources gathered in this case are shown in table 1.

Type Year Pages / Duration Code for reference

Jonah’s Just Begun website 2019 - (JJB website)

Phoenix Nest website 2019 - (Phoenix Nest Website)

HANDS consortium website 2019 - (HANDS)

Jonah’s Just Begun Blog 2010-2019 351 pages (JJB Blog)

Jill Wood Interview with CNN 2013 2.04 min (CNN)

Jill Wood Interview with Good Morning America

2012 4.09 min (Good Morning

America)

Jill Wood video The Origins and goals of JJB 4.18min (Origins and goals)

Presentation FasterCures 2013 23.18min (FasterCures)

Rare disease Congressional Caucus 2017 12 min (Congress)

Poster 2015 1 page (Poster)

Interview CSO, Collaborative Drug Discovery, 2012 15 min (CSO interview) Incentives for Starting Small Companies

Focused on Rare and Neglected Diseases, article

2015 7 pages (Rare diseases)

Interview conducted with Jill Wood 2019 45 min (Jill)

Interview Sean Ekins 2019 50 min (Sean)

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Data Collection

This paper applies a case-study approach with a longitudinal case of a social enterprise Jonah’s Just Begun/Phoenix Nest which operates in the orphan disease drug development industry. The case-study approach proves insight & evidence of the dynamics present within single settings (Eisenhardt,1989). The case concerns Mrs. Jill Wood whose child, Jonah, was diagnosed with Sanfilippo type C. The case focuses on the development by Jill of Jonah’s Just Begun, a social enterprise, with the aim of raising awareness and developing a treatment. Subsequently this enterprise evolves to become Phoenix Nest, a commercial entity, which was developed in order to further pursue the social goals, as stated above, but in addition, operates as a commercial entity. A process study is undertaken, including data from multiple respondents and several other sources such as publications, reports, web pages, etc. This research follows the process of building theories from case study research (Eisenhardt, 1989).

During the first stage of data collection, we use extensive documentary evidence pertinent to the case, as shown in table 1. above. This data provides the basis for preliminary analysis gave a more detailed understanding of the organization and the field of orphan and rare diseases activism and drug development. Allowing for an initial understanding to be built relating to venture history, personal history, goals, goal conflicts, requirements, challenges, commitments, and goals.

This allowed for a timeline to be created, aligning the key events and activities of the case. We analyze each phase, relating to the previously stated definitions for the different manifestations of moral legitimacy, and the effects that their success these have on the case's performance.

During the second stage, we conduct semi-structured interviews with Phoenix Next (formerly Jonah’s Just Begun) CEO and co-founder Mrs. Jill Wood and co-founder and former CEO Dr. Sean Ekins to triangulate and further enrich the data.

Questions are created before the interview by utilizing the data collected during the first stage. The advantage of semi-structured interviews is that there is also room for non-formulated questions that arise during the interview. The sequence of questions can be amended and questions can be modified.

Sampling

This study is focused on looking into a scarcely researched phenomenon, namely how unconventional organizations acquire moral legitimacy and how this moral legitimacy can potentially adversely impact the organization. This has been translated into the following research questions:

Question 1: How do organizations operating across institutional logics gain moral legitimacy?

Question 2: How the gaining of this moral legitimacy affects organizational performance?

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Wagner, Glaser, and Strauss (1967), where different criteria are taken into account. Firstly, in order for an enterprise to be applicable for this research, the following preconditions are necessary;

● An enterprise that operates outside of the standard industry norms. This is so an understanding of how non-standard organizations gain legitimacy can be met.

● Information about the organization throughout its developmental timeline needs to be available. This allows for the dynamics involved in the gaining of legitimacy and performance can be observed.

● The organization should have clearly stated strategic goals. This allows for performance towards these goals to be observed.

Variables

Legitimacy

Our working definition of legitimacy is the most definitive and widely used definition that, “Legitimacy is a generalized perception or assumption that the actions of an entity are

desirable, proper or appropriate within some socially constructed system of norms, values, beliefs, and definitions”(Suchman, 1995 p.574).

In his paper, Suchman (1995) proposes a more specific legitimacy typology. Within this typology, he proposes pragmatic, cognitive and moral legitimacy. For this study, moral legitimacy and its four manifestations are defined & used as variables.

Types of Legitimacy

Pragmatic Moral Cognitive

Based on the calculation of interests of actors who are more closely linked to the organization.

Reflects a positive assessment of the organization and its activities, based on socially constructed values.

Consists of the acceptance of the organization as necessary or inevitable from the point of view of a determined cultural

framework. The existence of the organization is taken for granted, which means that the actors no longer imagine its non-existence. Source: Prepared from Suchman (1995).

Table 2. Types of Legitimacy

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Moral legitimation strategies

Procedural legitimacy Structural legitimacy

● Cross-subsidization of revenue

● Attention to product design and usability

● Employee socialization

● Operational efficiency

● Patenting or trademarking

● Embrace identity

● Compete with social offerings

● Partnerships

● Affiliations

Personal legitimacy Consequential legitimacy

● Exemplified through - Ethos

● Motivations, - Stories

● Awards, - Media exposure

● - highlight solving the social problem

● - show contributions to solving social issues closely related to the primary problem

● - underscore environmental and societal outcomes

Source: Prepared from Singaram (2016). Table 3. Moral legitimation strategies

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Case description: Jonah’s Just Begun & Phoenix

Nest

Phase 1: Jonah’s Diagnosis

Jonah was born a healthy child to parents Jill and Jeremy on 30th July 2008. However, during a regular check-up, the pediatrician noticed some abnormalities “Jonah’s head

circumference was off the charts” (FasterCures). The doctor suggested that they take him for

an MRI scan: “The MRI was done at NYU hospital which just so happened to be researching

Sanfilippo type II, so they knew exactly what they were looking for when they saw the shape of Jonah’s skull” (FasterCures).

This led to further tests and on 10th May 2010, a day that Jill describes as “ground-zero day” (JJB Blog), Jonah was diagnosed with having Sanfilippo syndrome type C, or MPS IIIC, which will be referred to as (Sanfilippo type C) an ultra-rare disease. Sanfilippo Syndrome is divided into four subtypes: A, B, C, and D. Jonah has Sanfilippo Syndrome subtype C the rarest form with estimated incidence rates of 1 in 1,400,000 people (JJB website). Sanfilippo affects the lysosomal cell and leads to increasing behavioral disturbances. Children ultimately become immobile and unresponsive as it progresses. There is no Food and Drug Administration (FDA) approved treatment.

When children receive a diagnosis for an ultra-rare terminal disease, the parents are commonly told, “to take the child home and make them comfortable” (Origins and goals). However, Jill and Jeremy decided to fight the diagnosis after receiving advice from their doctor and from Jonah’s geneticist. The parents initially experienced a stigma surrounding their role as parents of a sick child when seeking to engage with medical professionals at these conferences whereby medical professionals considered “that parents don't know what they are

doing” (JJB Blog).

Phase 2: Founding of Jonah’s Just Begun

Inspired by the advice given by their doctors to fight Jonah's diagnosis, Jill decided to co-found Jonah’s Just Begun (JJB). As a non-profit organization with her husband Jeremy. The goals JJB set out to achieve, were to raise awareness and support those diagnosed with Sanfilippo, while also driving the science into researching possible treatments for Sanfilippo, and mainly to find and develop a cure for Jonah. Jill began working on these goals straight away. She received advice from her clinicians “They told me to reach out to PubMed where I

found all the scientists working on Sanfilippo” (JJB Blog). Whereby she found and reached out

to Dr. Alexey Pshezhetsky who was researching lysosomal storage diseases.

Neither parents had previous experience of running an organization, they reached out for advice from their clinician Dr. Wendy Chung who advised Jill to set up a scientific advisory board (SAB) for JJB. This consisted of Dr. Wendy Chung and members of her professional network. The SAB provided the parents with advice, “Our scientific advisory board was

instrumental. They told me what to do and I did it” (Origins and goals). This was taken on

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attending genetic conferences focused on lysosomal storage disease (JJB Blog). Jill began to

engage with researchers and managed to create an international research team.

This team included researchers Dr. Alexey Pshezhetsky in Montreal, Canada and Dr. Brian Bigger in Manchester, England. Together with the SAB, they met and identified the three most appropriate approaches for treating Sanfilippo. By September 2010, JJB made the first grant payment to Dr. Alexey Pshezhetsky for his work on chaperone therapy.

Through networking with the other MPS organizations Sanfilippo JLK, Sanfilippo Barcelona and Sanfilippo Sud, the Helping Advance Neurodegenerative Disease Science society (HANDS) was created. The HANDS society is a consortium of global Sanfilippo societies created to raise awareness of Sanfilippo, “There were several families that came

together. We are more powerful in numbers” (Jill). However, the patient population of people

with a Sanfilippo diagnosis is still very small. Together they created a website, blog and Facebook page with the purpose of raising awareness. JJB also began working on creating a national history study this was in order to have a live register of the number of people living with a Sanfilippo diagnosis in the United States.

Phase 3: Founding of Jonah’s Just Begun

Through attending events and conferences on lysosomal storage diseases Jill met Julia Jenkins the Executive Director at EveryLife Foundation for Rare Diseases, which the Rare Diseases Legislative Activists (RDLA) is a program of. Julia was impressed with Jill efforts to make a social impact within the Sanfilippo community. She invited Jill to help add new provisions to the Orphan drug act.

The orphan drug act aims to incentivize pharmaceutical companies to develop treatments for rare diseases. However, the act did not acknowledge ultra-rare diseases such as Sanfilippo type C, with incidents rates of 1 in 1.4 million people.

Jill sought to get recognition for ultra-rare diseases to be added to the legislation. The legislation was introduced to Congress as the “ULTRA -act”. The Orphan drug act provides certain benefits for the development of treatments for rare diseases. In order to give future children diagnosed with Sanfilippo a better chance of receiving a treatment, changing legislation became a key goal for Jill and JJB. During 2011 Jeremy returned to work with his job as a cameraman while Jill continued running JJB.

Phase 4: Starting the commercial entity Phoenix Nest

In November 2011, Jill met Sean Ekins who was presenting at the Partnering for Cures conference. Jill was looking for advice on the next steps for JJB to take. She had become frustrated at the speed of the regulatory processes for bringing new drug developments to a clinical trial. “The science moves faster than the politics” (JJB Blog). Sean who had previous experience in the biotech industry suggested, “Why don’t you start a company, because then

you can go after small business grants from the National Institutes of Health (NIH)” (JJB Blog).

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researchers from Canada and England in July 2012. Phoenix Nest took over the work and goals of JJB. It continued funding Dr. Bigger and Dr. Pshezhetsky while at the same time working on raising funds for the ongoing natural history study.

Sean Ekins joined the team as he was impressed by the work that Jill had done previously and began to work on applying for NIH grants. Jill made Sean CEO of Phoenix Nest in order to be more accepted within this commercial field due to his experience and education. The reasons for the formation of Phoenix Nest were twofold, “to perform and fund

research development with our academic partners as well as ultimately commercialize treatments for this disease” (JJB Blog). The patient population is not large enough for the

majority of drug companies to take an interest. Therefore, Jill decided to hedge her bets, “If a

pharmaceutical company does not pick up one of my treatments, I am going to do it myself”

(JJB Blog).

Phase 5: Lobbying against certain changes to legislation by large

pharma companies

Large pharmaceutical companies began to lobby against elements in the proposed changes to legislation after it was put forward. Large pharma began to feel nervous about the new abilities of small virtual biotech companies to develop treatments without assistance, “They’re afraid that once the FDA starts working for us (the people) that small biotech's like

Phoenix Nest will be able to research and develop drugs without their help”(JJB Blog). This

would be cutting them out of huge profits.

In order to get the changes made to the legislation, Congressman Ed Towns volunteered to speak on behalf of Phoenix Nest and ultra-rare. This added a political spokesperson for Jill and the RDLAs attempts to change the legislation. This is important as previously stated by Jill “If this legislation doesn’t pass, we must accept the fact that we may

watch our kids die a slow painful death from a treatable disease, but we lacked the political will to change the status quo that prevents the transformation of science into medicine”(JJB Blog).

Celebrity actor Johnny Lee Miller, who was working with Jeremy elected to join the team and help raise awareness through giving interviews and competing in sponsored ultra-marathons.

Phase 6: Winning of awards and grants

During this period Phoenix Nest finally had success in winning NIH grants after several failed attempts. The application process was made difficult due to Jill's name being on the applications. Her lack of experience and research background meant that winning grants proved challenging. “The first grant we won, I was grilled hard by my grant manager, she

couldn’t grasp the idea that a non-academic person would be sitting at her desk at home, managing NIH grants” (JJB Blog).

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work internationally. Efforts were made to find scientists based in the United States. In 2014, Phoenix Nest collaborated with LA Biomed, which is a leading independent biomedical research institute. The collaboration enabled Phoenix Nest to work with researchers based in California, thereby adhering to the NIH stipulations.

During this phase of development, JJB/Phoenix Nest and Jill received recognition from other members of the orphan and rare diseases community for their work. The RDLA recognized Jill for her contribution as a rare disease advocate by nominating her for the rare disease legislative advocates, Rare Voice Award. In 2013-2014, the Jonah's Just Begun project won a prize in the Rare Disease Science Challenge.

Phase 7: Dealing with MBAs and commercial organizations

In 2015, Phoenix Nests research team considered their gene therapy trial as being close to being ready for trials. Funding was required to take it further. In order to raise funding, Jill engaged with commercial pharmaceutical firms and venture capitalists “At this point, money

is the only thing standing in our way”. “The MBA’s are the gatekeepers between a treatment and the clinic” (JJB Blog). Engaging with VCs and commercial organizations proved difficult,

as “It is really hard to justify the business case for such a small population no matter how we

try.” (CSO interview).

In 2016, Phoenix Nest won a $1.7 million funding grant. This enabled them to continue their work with LaBiomed and research Sanfilippo type C treatments.

The Lysosomal Disease Network (LDN) approved Phoenix Nests National History study and proposed it to the FDA. In 2017, the proposed National History study received its approval from the NIH. This was after seven years of trying and time-consuming work on the proposal, “One of the big issues is the amount of time it takes. The boards might meet once a

quarter. So, if your institutional review board (IRB) considers that your study isn’t perfect then they give it back to you to fix it. Then they reconvene in another four months” (Jill).

In 2017, Jill was asked to represent Phoenix Nest, Inc. and to speak at the Rare Disease Congressional Caucus briefing in Washington, D.C. for Rare Disease Week. In 2018, The National Institute of Neurological Disorders and Stroke at the National Institutes of Health (NIH) awarded $5,612,276 in Small Business Innovation Research (SBIR) Phase IIB grant funding to Phoenix Nest.

In February 2019, Sean Ekins left his role as CEO of Phoenix Nest due to his ideas for the organization not being followed “If we were a full-time company and not a virtual

organization, we would already have the treatments by now” (Sean). Jill now fills this role. Jill

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Data Analysis

Phase 1: Jonah's Diagnosis

From Jonah's initial diagnosis, his parents experienced shock at their son’s situation:

“When Jonah was diagnosed, I went out of my mind, I’m not joking, and I was in a fit of rage, that’s the only way to describe myself. I had to lift the bus off my child!” (JJB

Blog)

They decided to go against the standard procedure for parents with a child diagnosed with a rare disease and committed to searching for a cure.

In order to do so, Jill and Jeremy acquainted themselves with the Sanfilippo disease, the research being conducted on lysosomal storage diseases, and the medical field. They had no previous experience in these fields and, as such, needed to build their own legitimacy and credibility to be taken seriously by the scientists and medical professionals outside of their network.

In attending conferences and initially reaching out to medical professionals they came across the stigma surrounding parents of a terminally sick child within the medical community. Whereby they were perceived as grieving parents, who should “leave it up to drug companies” (Jill). They engaged in the following activities shown in table 6 in order to overcome this stigma.

Phase 1. Actions & Activities

Researching Sanfilippo “We hit PubMed, we read every single paper published on Sanfilippo” (JJB Blog).

Reaching out to doctors “We went after the authors of these papers and met them in person” (JJB Blog).

Table 4. Phase 1: Legitimacy seeking actions and activities.

Moral legitimacy dynamics Phase 1.

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“People looked at me with pity and politely implied: '' you're screwed" (JJB Blog).

Researching Sanfilippo helped the parents to gain initial legitimacy as parents with a knowledge of the disease and begin to overcome their stigma. Through acquainting themselves with the disease through researching Sanfilippo, they began to gain legitimacy within the medical and Sanfilippo society communities.

Personal legitimacy was seen to be gained within this logic of a parent of a sick child. However, this was still a low level of legitimacy due to their lack of experience and knowledge with the fields and the disease. No set goals for performance were present during this phase as the parents were just coming to terms with the diagnosis and beginning the initial stages of research and network development. Therefore, there are no performance measures for this phase.

Phase 2: Founding of Jonah's Just Begun

Phase 2 started when Jill and Jeremy decided to found the social organization Jonah’s Just Begun (JJB). JJB was founded with the goals of driving research into Sanfilippo, raising awareness and finding a cure for Jonah. This gave them a visible organization from which to operate and raise funds. In order to make progress towards these goals, they required acceptance from the Sanfilippo community which holds the social impact logic.

Phase 2 Actions and Activities

Founded JJB “I called our lawyer and she created the non-profit for us.” (Origins and goals). Continue to attend conferences

and events

“I attended conferences such as Genetic Alliance, Partnering for Cures, WORLD, and ASHG” (CSO interview).

Created a team of international researchers

“JJB has found an international team of experts working on a handful of different treatment options right now”(JJB Blog).

Developed HANDS consortium “We've also formed a consortium of scientists, clinicians, and parents” (CNN

interview).

Created a Scientific Advisory Board

(JJB website)

Initiated National History Study “Announced the official Sanfilippo patient registry and a natural National History

Study, which follows a group of people with a disease over time” (CNN interview).

Makes payment to Alexey “Within the first six months, we raised 20,000 dollars, which we gave to an

investigator in Canada”(Origins and goals).

Created an online awareness campaign

Mission Hide and Seek (JJB website)

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Through engaging in the actions and activities outlined in table 7, they sought to make progress towards these goals which in turn had an effect on their legitimacy building.

Moral Legitimacy Dynamics Phase 2.

Structural legitimacy was gained during this phase through the creation of a visible organization. This allowed for fundraising to take place. The addition of the scientific board made up of respected clinicians and scientists added to this structural legitimacy.

“Yes for sure, having the scientists, the advisory board and the board of directors certainly helped in getting us accepted.” (Jill).

Personal legitimacy was seen to be gained through the addition to the team of people respected in the field for their experience and knowledge. This is the SAB. These additions added field experience that the parents did not possess. The previously gained personal legitimacy by Jill and Jeremy as parent advocates was maintained and transferred across to the social impact logic present within this environment.

“The team that I work with and the scientists that I work with are all top notch and very well respected. People see that and they vouch for me and stand up for what I do. Pharma and organizations that I work with see that and know that the people that I am

working with are the best. This helps me be accepted in the field” (Jill).

The logic of the social organization's industry was followed, and these were the rules and regulations that JJB conformed to in order to gain procedural legitimacy. Procedural legitimacy was gained from the registering of the social organization through the correct measures for social organizations.

“Ok, foundation 501c3, I didn’t even know what that was before this happened. I called our lawyer and she helped me create the non-profit” (Origins and goals)

Consequential legitimacy was gained for JJB during this phase by contributing to scientific research. By September 2010, JJB made the first grant payment to Dr. Alexey Pshezhetsky for his work on chaperone therapy. This allowed Alexey to continue his preliminary research and to gain a grant from the Canadian government

.

“Within the first six months, we raised 20,000 dollars, which we gave to an investigator in Canada, with that he started his chaperone therapy” (Origins and goals).

Performance of the organization Phase 2.

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of raising awareness. The creation of the HANDS society as well as initiating the NHS also helped make progress towards this goal.

“It’s important to continue to spread our campaign as far and wide as we can. Networking and raising awareness pay off “(JJB Blog).

In developing a research team and contributing to Dr. Alexey’s research, progress was made towards the goal of driving research and searching for a cure.

Phase 3: Adding Provisions to Legislation

From building her personal legitimacy during the previous phases within the ultra-rare disease’s environment. Jill encountered Julia Jenkins. Julia Jenkins is the CEO of the RDLA. Julia was impressed with Jill's social impact from starting the NHS and raising awareness of Sanfilippo. Julia invited Jill to work with the RDLA. Jill joined the RDLA team, as she wished to get more incentives for Sanfilippo treatment research to benefit the entire Sanfilippo community. Here we see that Jill's social impact ethos helped her develop relations with other organizations within the rare and orphan disease sector.

To make a social impact in the field of Sanfilippo research, Jill attempted to get research into Sanfilippo and other ultra-rare diseases more accepted.

“There is no official recognition of ultra-rare diseases” (JJB Blog).

In order to do so, the following activities were engaged in:

Phase 3 Actions & Activities

Affiliates with RDLA “A friend introduced me to Julia Jenkins at RDLA, she invited

me to get involved to have language added to Prescription Drug User Fee Act (PADUFA)” (Good Morning America)

Attempts to change legislation “The points that I specifically lobbied to have added to

PADUFA, will accelerate FDA approval for clinical trials for rare diseases” (CSO interview).

Attempts to gain official

recognition for ultra-rare diseases

“There is no official recognition of the ultra-rare disease, (JJB Blog)

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Moral Legitimacy Dynamics Phase 3.

Structural Legitimacy was enhanced for JJB by affiliating with the RDLA a respected organization in the rare disease’s activism field. The previously gained structural legitimacy was maintained at this stage. Jill’s personal ethos of making a positive social logic, for the entire orphan and rare disease sector, meant that her personal legitimacy was enhanced. This was furthered by her continuing to attend conferences and events relating to lysosomal storage diseases and other ultra-rare diseases.

“One of the main things that got Jill accepted is I think she was very accessible to others within the industry. She met with many companies; she did a lot of advocacy

from the patient's side. She was the voice for many of these rare disease families” (Sean).

Using Congress as a means to achieve JJBs social goals of raising awareness and developing a cure can be seen to have gained further legitimacy for JJB. This was through gaining using legislation in order to make changes for the recognition of ultra-rare disease. This is seen as gaining procedural legitimacy. Through engaging in action to get official recognition of Sanfilippo as an ultra-rare disease, consequential legitimacy was further gained.

Performance of the organization Phase 3.

Through working with the RDLA in making proposed changes to legislation, Jill continued to make progress towards her goal of raising awareness for and driving the science behind Sanfilippo research. By making the proposed changes, the RDLA and Jill were seeking to make researching Sanfilippo and bringing it to market more attractive to commercial organizations as well as researchers. JJB maintained their progress during this phase towards the goal of finding a cure through seeking recognition of ultra-rare diseases which would include Sanfilippo types A, B, C & D.

Phase 4: Starting the commercial entity Phoenix Nest

Jill met Dr. Sean Ekins through attending of a partnering for Cures conference. Sean was impressed with Jill’s story and the impact she had already made within the orphan and rare disease sector. Sean provided Jill with advice from his experience in the biotech field and they decided to work together and create a virtual biotech. Phoenix Nest was then created operating as a virtual biotech with the same social goals as JJB but in a market setting. By starting a commercial organization, Jill added the role of entrepreneur, to that of social activist and parent of a terminally ill child. Sean joined the team and became Ceo after persuasion from Jill. Founding Phoenix Nest enabled them to compete for small business grants from the NIH. In creating a commercial organization, the commercial logic of gaining legitimacy within the market logic is seen to be required. From continuing to operate JJB and Phoenix Nest jointly the social logic was maintained through the organization operating as a hybrid organization.

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Phase 4. Actions and Activities (Phoenix Nest)

Connects with Sean Ekins “I met Jill at a conference, and we had the idea to do it to start

a company.” (Sean)

Starts to apply for NIH grants “We applied for a number of small business grants for a few

years,” (Sean)

Further develops SAB and board of directors

“My help was just bringing in a few more scientists from the chemistry side” (Sean)

Sean made CEO “Asking Sean to stand in front of me as CEO was not a hard decision- he’s a man with a Ph.D. even, he’ll be accepted” (JJB

Blog).

Table 7. Phase 4. Legitimacy seeking actions and activities

Moral Legitimacy Dynamics Phase 4.

Structural legitimacy was gained during this phase through complying with the market logic and founding a commercial biotech. This structural legitimacy was added to the previous structural legitimacy gained during the previous phases by the research team, SAB and board of directors remaining in place.

“I formed a company called Phoenix Nest to perform and fund research and development with our academic partners as well as ultimately commercialize

treatments for this disease” (JJB Blog).

Phoenix Nest gained personal legitimacy through the addition of Dr. Sean Ekins to the team and his appointment as CEO.

“Sean was there because he had a Ph.D. I put him in front of me to get the grants and the licensing. Sean was integral in getting the grants.” (Jill)

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“I was grilled hard by my grant manager, she couldn’t grasp the idea that a non-academic person would be sitting at her desk at home, managing NIH grants” (JJB

Blog).

This was seen as being due to her lack of previous scientific or business experience. Procedural legitimacy gained through the previous phases as a social organization within the research and social institutional logics did not transfer across to the commercial market logic and therefore procedural legitimacy gaining was required.

Consequential legitimacy was maintained from the previous phases. It did not experience any difficulties in transferring across the different logic at this stage.

Performance of the organization Phase 4.

Through creating a commercial organization, JJB/Phoenix Nest made progress towards the goal of driving Sanfilippo research as well as finding a cure for Jonah. The commercial organization was able to apply for grants and be more likely to bring treatment to commercialization. Therefore, progress was made towards the achievement of these goals.

However, by now operating across the conflicting social and commercial logics, new legitimacy was required for the organization in order to be accepted as a commercial entity. These legitimization-gaining activities meant that time and attentional resources were diverted to creating new legitimacy in place of the previous legitimacy and not towards goal achievement. Here we recognize the emergence of goal conflicts.

In addition, the initial personal legitimacy gained through the addition of international scientists and the international research team led to difficulties when applying for NIH grants. These grants were not stipulated for scientists operating outside of the United States. This led to time delays in progress being made on scientific research. This meant that time was spent engaging in fundraising to keep the international researchers funded. Significant delays to the goals of driving science and searching for a cure for Jonah ensued.

“I think looking back at it, if we were full time and were we not a virtual company, we would already have the treatments by now. ... Time was always a factor. Jill was running out of time, because of her son progressing with the disease. This is the case

for all the children with this disease, and then you have all these things that work against you” (Sean).

Phase 5: Lobbying against certain changes to legislation by large

pharma companies

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of large pharma companies started to arise. The major activities engaged in during this phase are outlined below.

Phase 5. Actions and Activities

Political endorsement Congressman Ed Towns speaks on behalf of the RDLA and Phoenix Nest (JJB website)

Large pharma lobbies against Aspects of proposed

legislation

“Pharma is pressuring the Energy and Commerce committee to not add our language” (JJB Blog).

Celebrity endorsement Jonny Lee Miller joined the JJB/Phoenix nest team (JJB website)

Table 8. Phase 5. Legitimacy seeking actions and activities.

Moral Legitimacy Dynamics Phase 5.

Large pharmaceutical companies lobbying, challenged the structural legitimacy of Phoenix Nest as a virtual biotech. The idea of a small virtual biotech being able to develop treatments without their assistance did not appeal to their commercial nature and market logic.

“Big Pharma is nervous! They don’t want any more competition. Pharma is pressuring the Energy and Commerce committee to not add our language. They’re afraid that once the FDA starts working for us (the people) that small biotech's like “Phoenix Nest” will

be able to research and develop drugs without their help. Cutting them out of huge profits. For us it’s not about the profit it’s about saving our kids.” (JJB Blog).

Having congressional representative, Ed Towns speak on their behalf helped enhanced the personal legitimacy of Phoenix Nest. Jill’s own personal legitimacy was also enhanced through her actions in lobbying for the proposed changes to legislation, as outlined by Sean Ekins.

“She would go to Capitol Hill, or wherever she was needed to talk and legislate for them.” (Sean).

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“If this legislation doesn’t pass, we must accept the fact that we may watch our kids die a slow painful death from a treatable disease, but we lacked the political will to change

status quo that prevents the transformation of science into medicine” (JJB Blog).

Phoenix Nest’s efforts to get official recognition for Sanfilippo as an ultra-rare disease enhanced their consequential legitimacy across all three logics. This would enable scientific research and treatments to be developed in a timelier manner.

Performance of the organization Phase 5.

Time was a crucial factor in Phoenix Nest’s efforts to achieve its goal of finding a cure for Jonah and a major reason behind the attempts to change legislation.

“The time it all takes this blows my mind. I have personally gotten onto a plane and flown to Manchester England to tell people to “hey get it going”. I have called peoples

bosses to put pressure on them. We don’t have time. This was one of the main reasons that I started Phoenix Nest.” (Jill)

However, the emergence of goal conflicts with the commercial logic of the stakeholder’s, large pharmaceutical companies have a negative impact on their attempts to achieve the goals of driving the science into Sanfilippo and developing a cure. Progress was made towards the goal of raising awareness of ultra-rare diseases during this phase through raising the issue of the lack of recognition of ultra-rare diseases in Congress.

Phase 6: Winning of awards and grants

Due to the actions of the previous phases, JJB/ Phoenix Nests appear fully accepted within the social logic. Legitimacy gaining efforts continue in the market logic.

Phase 6. Activities

Wins NIH grants “We applied for a number of small business grants…...over the next four years or so we got a total of five.”(Sean)

Grant winning leads to changes in the internal structure

So we had to find alternative scientists or alternative projects (Sean)

Jill wins an award from RDLA Wins rare disease advocates award (JJB Blog)

Speaks at Congressional Congress Jill presents at the 2017 rare disease congressional congress (Congressional Congress)

Collaboration with LaBiomed (JJB Website)

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Moral Legitimacy Dynamics Phase 6.

Structural legitimacy of Phoenix Nest is seen as lacking by the NIH. Phoenix Nest operates with scientists located outside of the United States in England and Canada. These scientists are not entitled to funding from the NIH grants.

“The difficulties initially was that the main scientists working on the diseases were not in the US. They were in Canada or Europe. And so we had challenges in trying to get funding for them, through the grant process. So we had to find alternative scientists or

alternative projects” (Sean).

Phoenix Nest changed its internal operations in order to gain acceptance as a commercial organization from the NIH. Phoenix Nest collaborated with researchers inside of the United States in the form of LaBiomed was conducted. This gaining of structural legitimacy came at a price, as challenges were faced in dealing with new researchers.

“The challenges were that if you’re not there in the proximity it's hard to keep tabs on what they are doing. So that creates challenges in itself. These collaborations were mostly on the west coast of the US and both Jill and I are on the east coast of the US so

that's a big difference geographically” (Sean)

Jill gained personal legitimacy during this phase, through recognition of her contribution towards making a social impact by the RDLA. Jill also extended her legitimacy through continued attending of events and speaking at a congressional congress meeting.

“One of the things that has meant that I have been accepted is that I understand that my son is not going to live but I am going to fight for the next generation. This is no longer

about individuals it is so much bigger than me and my son.”(Jill).

The successful completion and winning of multiple NIH grants gained procedural legitimacy for JJB/Phoenix Nest.

“You’d have to be in this space to really have a handle on how hard these grants are to win. The science has to be top notch and the competition is fierce” (JJB Blog).

Consequential legitimacy is gained during this phase through the winning of multiple NIH grants, which allowed Phoenix Nest to continue its research projects.

Performance of the organization Phase 6.

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“We had to find alternative scientists or alternative projects. So, we were able to get funding for different forms of Sanfilippo diseases than the type Jonah has initially”

(Sean).

This led to a slowing of progress to the goal of driving the science, as efforts were required to seek out scientists working within the US.

“There were definitely times when we were waiting for the grants. Especially for the stage I and Stage II type grants, and also the scientists had done some preliminary

work. They were basically waiting for funding in order to really get going. The scientists were waiting to get started.”(Sean).

Time is seen throughout the case as being essential towards the goal of finding a cure for Jonah. The waiting for the grants to be given was time that Phoenix Nest could not afford to lose. The raising of awareness goal was continued through the recognition of Jill and Phoenix Nest actions during this phase.

Phase 7: Dealing with MBAs and commercial organizations

During this phase, Phoenix Nest started searching for ways to bring the science and treatments that they have developed into the next stage. Dealing with commercial stakeholders was deemed necessary for financial resources. These stakeholders included large pharmaceutical companies, universities, lawyers and insurance companies, through negotiating licensing and IP agreements.

Phase 7. Activities

Wins multiple NIH grants Won 5 NIH grants with largest being 5.5m (Sean)

LDN approves National History study Our Natural History Study has FINALLY been approved by the Internal Review Board (IRB) at Montefiore Children’s Hospital (JJB Blog)

Invited to speak at Congress Jill speaks at the congressional congress (JJB website) Sean Leaves “Sean is gone. He left in February” (Jill)

Continues the search for partners “We’re actively seeking partnership now” (JJB Blog)

Negotiating with LaBiomed It took over two years to sort out the terms and conditions on our exclusive licensing rights for our ERT type D program with LaBiomed” (JJB Blog).

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In searching for commercial partners in order to take their projects to trial and commercialization conflicts between the social impact logics of JJB/Phoenix Nest and the commercial goals of potential partners emerged. Whereby they were met with a subdued to response to negotiations due to the market potential of Sanfilippo, not making commercial sense for commercial organizations.

Moral Legitimacy Dynamics Phase 7.

Structural legitimacy of Phoenix Nest diminished during this phase due to the exit of Sean Ekins from the team. This removed a valuable and experienced member of the team. Commercially based stakeholder also did not recognize Phoenix Nest as a viable business.

Commercial stakeholders during interacted with during this phase were seen to hold the commercial market logic. In dealing with these new stakeholders, Jill found herself experiencing a lack of legitimacy due to the new roles of CEO and negotiator.

“We had discussions that were quite difficult with people because they were not being reasonable around licensing and things. We were funding all of the work and yet they are trying to rip us off. There were people that were trying to scalp us to make money

off of us” (Sean).

The winning of NIH grants allowing for further research and the approval of the NHS led to consequential legitimacy being gained. This is as a result of progress made towards the social impact goals.

Performance of the organization Phase 7.

Goal conflicts manifested themselves during the search for commercial partners in order to commercialize the science. The market logic of pharmaceutical companies seeking profitable markets did not match with the social impact goals of JJB/Phoenix Nest.

“ It was very difficult to get anyone engaged because of the population being so small. You know Venture Capitalists were not interested, companies were not interested. Even rare disease companies, they felt it was too small even for them; we are talking big rare

disease companies. Sanfilippo is an ultra-rare disease with a very small patient population in the US “(Sean).

The social logic which JJB/Phoenix Nest was operating with did not match the commercial logic of stakeholders such as VCs and other commercial pharmaceutical organizations. Even though the goal of raising awareness of ultra-rare diseases has been met, the goal of finding a cure for Jonah has not yet been achieved. Gaining a commercial partner is the remaining goal for Jill.

The gaining and effects of legitimacy gaining on organizations operating outside industry norms.

Master Thesis