GRC Project Spotlight: FRAXA

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Boy with Fragile X syndrome playing with toy. Source: Peter Saxon 2014/Wikimedia Commons. Licensed under CC BY 2.0.

On the evening of July 22, 2020, over 60 monuments around the world were illuminated teal. These lightings were part of the #TealTakeover campaign initiated to commemorate Fragile X Awareness Day. Organized by the nonprofit organization FRAXA, this project, which began in 2018, is part of a greater initiative to increase awareness of Fragile X.

Fragile X Syndrome is a genetic condition that is the leading single-gene cause of autism and the most common inherited cause of intellectual disability, affecting approximately 1 in 4,000 boys and 1 in 8,000 girls globally. In 1994, three parents who had children diagnosed with Fragile X Syndrome came together to form FRAXA, a nonprofit organization that is dedicated to finding effective treatments and eventually a cure for Fragile X. To date, the organization has invested over $30 million USD in Fragile X Research and awarded 612 research grants.

FRAXA partnered with GRC to strategize ways to expand both the #TealTakeover initiative and the scope of its outreach. Over the course of the semester, our team focused on three main areas of research: corporate sponsorships, international outreach, and building a social media toolkit. After receiving our project assignments, we would spend the week compiling research either individually or in pairs, and then meet every Friday afternoon to present our findings to our project leader and chief associate. We would have another week to workshop and elaborate on our research wherever necessitated, and then present a finished slide deck in our next Friday afternoon meeting.

Corporate Sponsorships

The first piece of our corporate sponsorship research was to create a beginning-end workflow that FRAXA could use as a guide for securing sponsorships. The steps in order were to:

  1. Identify target sponsors, looking primarily toward previous sponsors and those with similar backgrounds, reputations, and values to assess fit
  2. Reach out to appropriate contacts, utilizing FRAXA’s pre-established network wherever possible for familiar introductions
  3. Develop a sponsorship proposal, highlighting FRAXA’s viability as a partner that can help a sponsor reach its target audience
  4. Negotiate sponsorship pricing, focusing on developing a framework that utilizes sponsorship levels that can be tailored to the sponsor’s available resources
  5. Establish points of contacts and expectations for future relationships in order to ensure ongoing communication

Following this, we created a pros and cons list that went into specifics on FRAXA’s network, uniqueness, size, and consistency in growth, all of which could potentially be used as a base from which to build the sponsorship proposal.

The next step in our corporate sponsorship work was to do case studies on other nonprofit organizations that have successfully worked with corporations in order to provide models for what sponsorships would look like once implemented. Each organization, similarly to FRAXA, focused on the rare disease space. While each organization differed in size and methodology, the common denominators that we found were that they offered tangible benefits to their partners, provided a wide variety of sponsorship options, and maintained good transparency and communication, which were reflected in their publicly available nonprofit ratings.

The final step in the corporate sponsorship process was to research and identify organizations that FRAXA could actually reach out to for partnerships, as reflected in the first step of the corporate sponsorship workflow.  All of the selected companies seemed to align well with FRAXA either through their industry space and experience or their commitment to corporate social responsibility, ensuring that they would feasibly be able to unite with FRAXA’s goals.

International Outreach

We began our research in international outreach by creating another workflow similar to the one outlined above, this time leaving out the step that focused on sponsorship pricing. This was because FRAXA wanted to focus on building partnerships that were not focused on revenue, but could instead help with advising and ultimately facilitating relationships that could expand the #TealTakeover initiative overseas. We then highlighted five international organizations that were a mix of corporations and charitable organizations like FRAXA, this time paying attention to whether or not they were proximate to a member of FRAXA’s network that could act as a “point-person.” To provide a more concrete example of how we envisioned outreach would go, we did a case study on India, coming up with a list of organizations and contacts that could help FRAXA with Fragile X awareness and monument lighting. We finished by also providing a list of five monuments that had good potential for an impactful light-up based on their location, recognition, and access to lighting technology.

Social Media Toolkit

The last piece of our work was to create a social media toolkit that FRAXA could use to widen its net. The ultimate aims of the toolkit were to move and motivate viewers that came across FRAXA’s page in order to inspire them to raise awareness and ultimately increase donations. After doing some research, it was decided that video would be the most effective way to share the stories of those with Fragile X Syndrome in a meaningful and impactful way, and then our team outlined effective distribution strategies and data tracking methods to ensure that social media campaigns would effectively support Fragile X Awareness day.

Current Work and the Future

After our midterm presentation with FRAXA — during which we presented all of these findings before our client — we decided to focus our work for the remainder of the semester on two areas: first, we decided to extend our corporate sponsorship work; second, we started to create an awards system to recognize the various contributors who have helped FRAXA in its success. The work that we have done thus far has been an educational experience in how to tailor effective research to client needs, as well as how to be conscious of and honest with potential obstacles in order to present solutions that can work. As we close out the semester, we look forward to assisting FRAXA in its goal of expanding Fragile X awareness and seeing more monuments light up the sky this July 22nd.

More posts by Lara Dada.
GRC Project Spotlight: FRAXA
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