Just about a year ago we received an 8p diagnosis for our son. We were told that he had a very rare genetic condition and that there wasn't much known. It was such a scary and isolating place to be as a parent. My husband and I immediately started down the google rabbit hole looking for answers and the we found Project 8p. Finding Project 8p gave us the ability to breath a little slower and deeper, it was a relief to find a community of people coming together and working together for answers. I have taken the research documents from Project 8p to all of our sons doctors. Since I was able to provide documentation of common health issues we were able to get additional baseline testing for our son. I provide all of the Project 8p write ups to his team of therapists so that they can better understand our son. Project 8p is a community of families, researchers and scientists coming together to help find answers about 8p disorders while also providing more insights into human genetics. It's such a wonderful organization and we are so grateful to have found it.
My name is Dr. Thomas Peterson and I am a Board Member for Project 8p. Coming into this organization I had much experience working with rare diseases but Bina and the Project 8p families within this organization put faces to the names of those impacted by this disorder. Project 8p's passion for bringing awareness and funding to a much needed space is both admirable and shows a true dedication to making a difference.
Project 8p is a phenomenal nonprofit. They're focus on finding and creating real solutions to families with 8p patients is priceless!
Project 8p continues to take a patient-led approach to research for Chromosome 8p patients and families. Providing community research updates, education, peer support and 8p awareness, all while driving research on this rare disease; this organization is advancing patient care and science for 8p heros around the globe.
Project 8p is an amazing organization! It is providing so much value (from therapists, scientists, medical professionals, experts in many different fields) to help 8p caregivers. In addition, Project 8p is also fantastic at providing both the space and opportunity to connect our family with other 8p families, thus, creating such a special community.
Project 8p is a tremendous resource for families embarking on journeys with their 8p Heroes. Whereas families were previously left to fend for themselves, with varying degrees of access to information and advocates, in a short few years, Project 8p is now a guiding light for this rare disease community, and a model for patient-centric non-profit organizations for all rare diseases. Bina Shah and the Project 8p team should be applauded for providing a clearinghouse for cross-disciplinary experts, pursuing research with the aim of therapies, and raising awareness of these diseases. Project 8p is well deserving of its funding and recognition by the Chan Zuckerberg Initiative as part of its Rare As One mission.
I could have never predicted how much progress this foundation would make a few years ago when it started. It has brought together people that once felt isolated and created a community that learns from each other. It has raised awareness. It has funded research to better understand the disorder to get closer to a treatment in the future. The foundation continues to collaborate with other organizations because many rare diseases share common goals. I am very proud to be on the board and expect great things from Project 8p.
Project 8p has done amazing things for our 8p community. When we were first diagnosed, 4 years ago, we had no information on the syndrome and was told there were only 52 other patients with an 8p diagnosis world wide. Thanks to the efforts by Project 8p to provide support, awareness, and much needed research for treatment, our community is now 350 strong and growing daily. Project8p is run by volunteers, families, and doctors. The foundation has total transparency on research, funding, and expenditures and runs almost entirely on volunteer support. Project 8p is a true example of how non-profits should be run.
Project 8p has paved the way in chromosome 8p research. In just 3 years they have become a valuable resource that keeps expanding. Families now have a place to turn for an unknown rare diagnosis. Project 8p is truly patient driven and will continue to support all 8p families!
Project 8p has given our family hope. Thank you for creating a foundation to support finding a way to allow our children to live their best life! I was fortunate to meet Project 8p founder Bina when she travelled to CA to attend a rare disease conference. The following year we attended the Global Genes Summit together as rare patient advocates for our 8p heroes. I am proud to serve on the Project 8p Patient Leader Board.
Project 8p provided the first opportunity to meet others living with 8p, connect with families and researchers. Their inaugural conference uncovered mysteries that we had mused over for 25 years; unsolved puzzles in my 8p hero's journey brought together and illuminated. New ideas, and collaboration on improving all facets of their life from therapy, diet, to cutting edge research. Thankful for new friendships, understanding and new hope for a brighter future for our 8p hero!
Only 3 years ago, if your loved one had a diagnosis of chromosome 8p rearrangement, you wouldn't know where to start and who to seek help from! With chromosome 8p as a previously undiagnosed rare genetic disorder, in less than 2 years, Project 8p Foundation has not only built a community around chromosome 8p patients, but has also enabled these patients and their families to be partners in Project 8p's efforts to better understand the disorder and paving the path for discoveries that would help the community. This Foundation has significantly impacted the lives of those diagnosed with 8p and continues to bring hope for a community who needs it the most. Being the " first" is always hard. Project 8p has taken upon that challenge with great dedication and enthusiasm.
I first learned of Project 8p at a rare disease-oriented nonprofit conference. Bina Shah, the organization's founder, is smart, kind, and driven to ensure the success of the program. I especially love how wonderful they are with the families within the 8p community and how Project 8p remains patient-centered.