Foundation for Prader-Willi Syndrome Research and Autism BrainNet
Prader-Willi syndrome (PWS) is a genetic disorder that occurs in approximately one out of every 15,000 births. PWS affects males and females with equal frequency and affects all races and ethnicities. PWS is recognized as the most common genetic cause of life-threatening childhood obesity.
The Foundation for Prader-Willi Research was established in 2003 by a small group of parents who saw the need to foster research that would help their children with Prader-Willi syndrome lead more healthy and fulfilling lives.
The mission of FPWR is to eliminate the challenges of Prader-Willi syndrome through the advancement of research and therapeutic development. High-quality research will lead to more effective treatments and an eventual cure for this disorder.
Why is donating brain tissue important to research and therapeutic development in PWS?
Our understanding of Prader-Willi syndrome (PWS) is advancing, but not as quickly as we, scientists and families, would want. One challenge is that the direct study of disorders that affect the brain, like PWS, is more difficult than disorders affecting other organs. While the development of models that mimic some aspects of PWS including cell and animal models have greatly advanced our understanding of the syndrome and have been critical for screening potential therapeutics before they are being tested in patients, there is no substitute for studying human brain tissue to unravel the complexities of the brain neurocircuitry changes in PWS.
Brain donation is critically important. Relative to donations of other organs for transplantation and/or research, brain donation is severely lagging, especially from children. “If we want better interventions, we need to look for neuropathology and find patterns of cell pathology.” says Dr. Patrick Hof, Icahn School of Medicine at Mount Sinai. “We need to build a significant research resource of donated brain tissue.”
FPWR’s partnership with Autism BrainNet will enable the highest quality brain tissue collection, storage and distribution to the PWS research community, be a valuable resource for researchers interested in PWS and in other-related disorders while ensuring the smoothest process for families in difficult times.
Brain tissue donation: Honoring loved ones through hope
Better insight into the cellular and molecular changes in the human brain that are associated with Prader-Willi syndrome (PWS) will help researchers to identify new and effective treatments. As research into the biology of PWS has become more advanced, studies on the postmortem human brain have become an important tool for understanding the neuropathology of the condition. However, brain donation is rare and tissue for research is not readily available.
Prader-Willi Syndrome Association | USA and Autism BrainNet
PWSA | USA has partnered with Autism BrainNet to help collect postmortem brain tissue from people who have PWS. Autism BrainNet collects, processes, stores, and then distributes collected donations as requested to qualified researchers worldwide.
“Postmortem brain tissue is an invaluable resource for advancing our knowledge of and identifying treatment options that can significantly improve the quality of life of individuals with PWS and their families,” said Paige Rivard, CEO of PWSA | USA. “PWSA | USA’s partnership with Autism BrainNet is a way to honor the memories of our loved ones while providing hope for a brighter future for our community.”
Who can donate and how
Autism BrainNet accepts postmortem brain donation from people of any age that have a diagnosis of autism or a genetic diagnosis, such as PWS. The process of brain tissue donation is simple for donor families, and Autism BrainNet provides compassionate support throughout.
- When the death of a loved one is near or has occurred, families call Autism BrainNet’s 24-hour, 7-day-a-week hotline to begin the donation process: 877-333-0999.
- Autism BrainNet then works with families and medical providers to obtain consent and to coordinate the donation.
- A follow-up meeting is scheduled for Autism BrainNet to learn more about the donor and to obtain medical, behavioral, and family information.
There is no cost to families and brain tissue donation will not interfere with funeral or memorial service plans. Preregistration is not required for donation, however, families are encouraged to download “Intent to Donate Postmortem Brain Tissue for Research” information sheet and the Autism BrainNet Brain Donor Card, both available on the Autism BrainNet website.
For more information about the donation process, call Autism BrainNet at 877-333-0999 or email firstname.lastname@example.org.