Today we’d like to introduce you to Amy Gray.
Hi Amy, thanks for joining us today. We’d love for you to start by introducing yourself.
Amy Gray is a champion for the undiagnosed disease community. As the CEO of the Undiagnosed Diseases Network Foundation (UDNF), she is leading the fight to improve access to diagnosis, research, and care for all individuals with undiagnosed and ultra-rare conditions.
Gray brings over two decades of experience in fundraising, operations, and patient advocacy to her role at the UDNF. She has previously held leadership positions at four national non-profit voluntary health organizations, including the Charcot-Marie-Tooth Association, the Parkinson’s Foundation, the Crohn’s & Colitis Foundation of America, and the Muscular Dystrophy Association.
Under Gray’s leadership, the CMTA tripled its annual revenue, expanded its Strategy to Accelerate Research and Center of Excellence Network, launched Patients as Partners in Research, and created new programming for youth and adults. The organization also earned a Perfect 100 score and 4-star charity rating from Charity Navigator, and a Platinum Seal of Transparency from GuideStar.
At the PF, Gray was responsible for providing the overall leadership, strategy, and vision for the foundation’s fundraising efforts and network of chapters. She launched several new fundraising and community engagement campaigns and led the foundation through the process of integrating the chapters and headquarters into one organization. She also played a critical leadership role on the transition team in the merger between the National Parkinson Foundation and Parkinson’s Disease Foundation.
Gray is also a passionate advocate for the rare disease community. She has served on the NIH’s Rare Disease Consortium Research Network steering committee the TREAT-Neuromuscular Disease International Consortium patient advisory committee and has been a mentor through the Chan Zuckerberg Initiative Rare as One program. In addition, she has been asked to speak at conferences such as Global Genes, the World Orphan Drug Conference, and Launch Bio on the importance of patient engagement in the drug development process.
Gray’s work at the UDNF is essential to the millions of people around the world who are living with undiagnosed and ultra-rare conditions. She is a tireless advocate for the newly formed foundation, and she is committed to ensuring that they have access to the resources they need to live full and meaningful lives.
A Personal Story
Gray’s personal commitment to the rare disease community began when she joined the Muscular Dystrophy Association (MDA). Her first week with the MDA, she attended the funeral for a young boy who passed away from a rare neuromuscular condition. She quickly learned the challenges and tragedies that families dealing rare diseases can face, and she became determined to make a difference.
A Vision for the Future
Gray has a clear vision for the future of the UDNF. She wants to see the organization continue to grow and expand its reach, so that it can help even more people with undiagnosed and ultra-rare conditions. She also wants to see the UDNF play a leading role in developing new treatments and cures for these diseases.
“I believe that we can create a world where everyone has access to the diagnosis, research, and care they need, regardless of their condition,” Gray says.
A Call to Action
Gray is calling on everyone to get involved in the fight against undiagnosed and ultra-rare diseases. There are many ways to help, such as donating to the UDNF, volunteering your time, or raising awareness of these conditions.
“Together, we can make a difference,” Gray says.
Alright, so let’s dig a little deeper into the story – has it been an easy path overall, and if not, what were the challenges you’ve had to overcome?
The rarity and complexity of undiagnosed and ultra-rare conditions make them incredibly challenging to study. Patients often experience a prolonged diagnostic odyssey, enduring uncertainty, and misdiagnoses. The scarcity of patients with similar conditions impedes the formation of large study cohorts, hindering the ability to conduct robust clinical trials and investigations. As a result, uncovering the underlying mechanisms and effective treatments for these conditions becomes a daunting task, demanding new methodologies that transcend traditional research paradigms.
Great, so let’s talk business. Can you tell our readers more about what you do and what you think sets you apart from others?
The UDNF’s Patient-Centered Research Program is designed to address these challenges and accelerate the pace of discovery for undiagnosed and ultra-rare diseases by:
Accelerating translational research: The UDNF will fund projects that ensure research studies are conducted in conjunction with clinical care, bridging the gap between scientific discovery and direct patient benefit. This integration will help expedite the translation of research findings into clinical practice, facilitating the timely identification of novel diagnostic methods and treatment options.
Strengthening the research infrastructure: The UDNF will support the development of a network of research sites that transcends the boundaries of fragmentation that have traditionally hindered collaboration among researchers. By supporting collaboration among centers, the UDNF will foster a dynamic environment where researchers can pool their expertise, resources, and data.
Investments in advancing new technologies: The UDNF will invest in new technologies that have the potential to revolutionize the way we study undiagnosed and ultra-rare diseases. This could include technologies such as gene editing, artificial intelligence, and synthetic biology.
Coordinated, integrated patient evaluation and follow-up: The UDNF will support research studies that incorporate both clinical and research tools to maximize the benefits of the research and to the patients and families who make it possible. This could include studies that use patient-owned data, such as genomic data, to identify new diagnostic markers and treatments.
A tiered, transparent set of resources: The UDNF will support a tiered system of research resources that provides efficient review and recommendations for all patients seeking diagnosis, with increasing resources based on need. This could include a system that prioritizes patients with rare or complex conditions or patients who have not responded to traditional treatments.
Equitable access to research: The UDNF will support research that is accessible to patients and families from all backgrounds. Through community-based research, subsidy of patient expenses, and engagement with patients and families in the research process, the UDNF will foster an atmosphere where individuals from varied backgrounds are empowered to contribute to and benefit from scientific advancements.
Contact Info:
- Website: https://udnf.org
- Facebook: https://www.facebook.com/UDNForg
- Linkedin: https://www.linkedin.com/company/udnforg
- Youtube: https://www.youtube.com/@UDNForg
