Proteus Syndrome Foundation

Proteus Syndrome Foundation The Proteus Syndrome Foundation, a 501c3 not-for-profit organization, is dedicated improving the lives of Proteus patients by funding AKT1 research.

WE DID IT! Thank you so much to everyone who donated to the Wheels For Jeffrey Fundraiser! We raised all the funds neede...
06/25/2026

WE DID IT!
Thank you so much to everyone who donated to the Wheels For Jeffrey Fundraiser! We raised all the funds needed to get Jeffrey's new chair and the order has been placed.

https://www.proteus-syndrome.org/wheels-for-jeffrey.html
Please consider making a tax-deductible donation today and sharing Jeffrey's story with others.

Recently Jeffrey's power wheelchair failed him.
​The brakes on his wheelchair stopped working, causing an accident that resulted in a trip to the hospital. Thankfully, Jeffrey was not seriously injured, but the incident highlighted a reality he faces every day: his current wheelchair is no longer safe or reliable.
For most of us, mobility means getting up and walking across a room. For Jeffrey, mobility means his power wheelchair. It is his independence, his freedom, and his connection to the world around him.

Jeffrey lives with Proteus syndrome and is non-ambulatory.

Because of his condition, he requires a specialized power wheelchair with a leg extension to accommodate his unique physical needs. Without a safe, functioning wheelchair, everyday activities become difficult and potentially dangerous.
We are raising $6,000 to help purchase a replacement power wheelchair that will allow Jeffrey to safely navigate his daily life, attend appointments, spend time with friends and family, and continue living as independently as possible.

Every donation, no matter the size, brings Jeffrey closer to receiving the mobility equipment he urgently needs.
The Proteus Syndrome Foundation is proud to support Jeffrey, but we cannot do it alone. We are asking our community, friends, family members, and supporters to come together and help provide something many of us take for granted: the freedom to move safely.

Please consider making a tax-deductible donation today and sharing Jeffrey's story with others.

Together, we can help put Jeffrey back in motion.

Abby and I are in town planning the PSF Family Conference for August 2026. We hope to see you there!
06/16/2026

Abby and I are in town planning the PSF Family Conference for August 2026. We hope to see you there!

Research matters because it leads to better care, better treatments, and better lives for people living with rare diseas...
06/10/2026

Research matters because it leads to better care, better treatments, and better lives for people living with rare diseases.

We are proud to see Proteus syndrome highlighted in this University of Miami Medicine article featuring Samantha Verling's work at NIH studying the natural history of Proteus syndrome and helping advance our understanding of this ultra-rare condition.

Her research during her fellowship at NIH aimed to improve diagnosis, distinguish Proteus syndrome from similar disorders, and help evaluate emerging targeted therapies.

The article also shares the inspiring story of a collaboration that grew from the Proteus Syndrome Foundation community into a children's book promoting self-acceptance and representation for children living with rare diseases.

Thank you to Samantha and all the researchers, clinicians, patients, and families working together to transform research into care.

Read the full article here:

Medical school students cite all sorts of reasons why they want to pursue a career in health care. Maybe a parent or sibling is a physician. Or they helped care for an ailing relative. Or they always did well in science classes. For Samantha Verling, B.S. ’19, M.S. ’21, M.D. ’26, the path to m...

https://www.proteus-syndrome.org/wheels-for-jeffrey.htmlPlease consider making a tax-deductible donation today and shari...
06/09/2026

https://www.proteus-syndrome.org/wheels-for-jeffrey.html
Please consider making a tax-deductible donation today and sharing Jeffrey's story with others.

Recently Jeffrey's power wheelchair failed him.
​The brakes on his wheelchair stopped working, causing an accident that resulted in a trip to the hospital. Thankfully, Jeffrey was not seriously injured, but the incident highlighted a reality he faces every day: his current wheelchair is no longer safe or reliable.
For most of us, mobility means getting up and walking across a room. For Jeffrey, mobility means his power wheelchair. It is his independence, his freedom, and his connection to the world around him.

Jeffrey lives with Proteus syndrome and is non-ambulatory.

Because of his condition, he requires a specialized power wheelchair with a leg extension to accommodate his unique physical needs. Without a safe, functioning wheelchair, everyday activities become difficult and potentially dangerous.
We are raising $6,000 to help purchase a replacement power wheelchair that will allow Jeffrey to safely navigate his daily life, attend appointments, spend time with friends and family, and continue living as independently as possible.

Every donation, no matter the size, brings Jeffrey closer to receiving the mobility equipment he urgently needs.
The Proteus Syndrome Foundation is proud to support Jeffrey, but we cannot do it alone. We are asking our community, friends, family members, and supporters to come together and help provide something many of us take for granted: the freedom to move safely.

Please consider making a tax-deductible donation today and sharing Jeffrey's story with others.

Together, we can help put Jeffrey back in motion.

Dennis Rinaldi’s Golf Cart Project in memory of his brother Daniel who had Proteus syndrome.
05/29/2026

Dennis Rinaldi’s Golf Cart Project in memory of his brother Daniel who had Proteus syndrome.

What began as one man’s effort to help his brother achieve independence has grown into a program that helps people with disabilities and anxiety gain confidence behind the wheel. The Golf Cart Project, founded by Dennis Rinaldi of One2One Coaching and Consulting in Old Saybrook, offers a low-press...

On May 7, 2026, Dennis and Colleen Rinaldi welcomed baby Charlie John Rinaldi to their family, and we couldn’t be happie...
05/18/2026

On May 7, 2026, Dennis and Colleen Rinaldi welcomed baby Charlie John Rinaldi to their family, and we couldn’t be happier for them!
We’re so excited for this wonderful new adventure and already looking forward to meeting Charlie at the PSF Golf Tournament and PSF Conference.
Dennis, who serves on the PSF Board, has a special connection to our community through his brother Daniel, who had Proteus syndrome. We are sending so much love to the entire Rinaldi family as they celebrate their sweet new addition.

PSF SPRING NEWSLETTER
04/06/2026

PSF SPRING NEWSLETTER

Email from Proteus Syndrome Foundation Updates and Information Newsletter   April 2026     Hello Families! I would like to welcome our new families to the PSF. We have new families from Türkiye, Mal

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