Rare Friends
Robyn Towt is a breast cancer survivor. She was diagnosed in 2017, had a double mastectomy and reconstruction with Mentor Silicone breast implants which caused an array of debilitating health issues. Robyn had explant surgery after just four months of having implants and her symptoms completely resolved. This experience led her to become an advocate for raising awareness about breast implant safety.
Terri Diaz is a harmed patient/breast implant illness survivor. What ultimately prompted Terri to become involved in patient safety advocacy was the results of her own 10-year debilitating illness due to an adverse reaction to breast implants placed in 2006. At the time of implanting, Terri was not informed of the side effects that can be caused by breast implants.
Robyn and Terri first met when they happened to be roommates while they were invited to speak at the FDA in September of 2018, the first meeting on the Safety of Breast Implants. They have been advocating and speaking out together ever since. We started to meet with our Global Advocates to implement changes and to share ideas. GPAC was born.
Shaping Foundations is a student-led 501(c)(3) nonprofit dedicated to advocating, raising awareness, and fundraising for rare diseases.
The four co-founders, Pooja, Liesha, Cayla, and Anirudh, all went to a healthcare-based high school where they noticed that rare diseases were often not focused on or taught to the same extent that other, more common conditions were. When doing more research, they found that this lack of education has caused many issues in the detection and treatment of rare diseases, inspiring them to start this organization to try and fix that problem.
Since then, they have spread word about various rare diseases through social media posts, YouTube videos, and podcast episodes.
They have also had many events that both raise awareness regarding specific aspects of rare diseases, collaborate with other members of the rare disease community, and directly support it. As the organization grows, they hope to continue working with the community and expanding their outreach and education to medical professionals in the hopes of improving rare disease research.
Foundation for Neuromuscular Support, Nigeria
Oyindamola Adeniyi started the Foundation for Neuromuscular Support Nigeria when she searched for help and did not get for her three siblings who had muscular dystrophy. She was willing to share her experiences and knowledge about the disease with others and hence, the foundation was born out of that need to help others who may be going through the same condition.
Presently, she has been able to reach and provide support for about twenty people living with neuromuscular diseases across different states in Nigeria.