Proteus Syndrome Foundation

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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.

Brian Richards developed a severe headache last weekend and was sent to the hospital for a CTscan.  The CT scan showed a...
10/16/2026

Brian Richards developed a severe headache last weekend and was sent to the hospital for a CTscan. The CT scan showed a tumor that was bleeding. His family had Brian transferred to Johns Hopkins hospital in Baltimore where he will have brain surgery tomorrow to remove the mass and determine if it is cancerous or not.
The mass is affecting Brian’s vision and memory at this time. We are asking for prayers and good thoughts for a good outcome as surgery is scheduled for 7 AM tomorrow (Saturday).

An update on Jeffrey: Hello Everyone,We have a few updates to share about Jeffrey, including some encouraging news!Jeffr...
10/12/2026

An update on Jeffrey:

Hello Everyone,

We have a few updates to share about Jeffrey, including some encouraging news!

Jeffrey has been able to move two of his fingers a couple of times, and he has also begun experiencing pain and sensation in his knees. These are small but hopeful signs, and we are holding on to every bit of progress.

Unfortunately, Jeffrey has not been accepted into a rehabilitation facility because of insurance issues. He remains in the hospital without access to the specialized rehabilitation he desperately needs to give him the best possible chance at recovery. It is heartbreaking to see signs of progress while knowing he isn't receiving the therapy that could help him move forward.

This has been an incredibly difficult journey for both Jeffrey and his mom, Alicia. She has spent every single day and night by his side, advocating for him and doing everything she can to get him the care he needs.

Jeffrey has been suffering from severe headaches related to his medications, and emotionally, he is struggling. He is frightened and uncertain about his future. He understands the seriousness of his condition and knows that proper rehabilitation could make a tremendous difference in his recovery. Unfortunately, right now, they feel stuck in a situation with very few options.

So, what happens next?

The current plan is to transfer Jeffrey back to Colombia, where he can hopefully receive the specialized care and rehabilitation he needs.

Alicia has taken on the enormous responsibility of finding a hospital willing and able to care for him. She has been in contact with Clínica Universidad de La Sabana, which has received Jeffrey's medical records and is currently reviewing his case to determine whether they can accept him.

Meanwhile, the hospital where Jeffrey is currently being treated is working on arrangements for a medical flight to Colombia, pending acceptance by a receiving hospital.

Where will your donations go?

Every dollar donated will go toward Jeffrey's care and needs as he transitions to a hospital that can provide the treatment and rehabilitation he deserves. There are still so many unknowns, and the financial challenges ahead are significant.

And finally, a message from Alicia and Jeffrey.

They want everyone who has donated, shared Jeffrey's story, prayed for him, or sent words of encouragement to know how deeply grateful they are.

The outpouring of love and generosity has been overwhelming. During some of their darkest moments, knowing that so many people care about Jeffrey has given them strength and hope.

There is still a long road ahead, but we are not giving up on Jeffrey. He deserves every opportunity to recover, regain his independence, and have a future filled with possibilities.

Thank you for standing beside Jeffrey and Alicia. Please continue to share his story. Every donation, every share, and every act of kindness truly matters. ❤️

Rare Disease Advisory Councils (RDACs) give people impacted by rare diseases a meaningful voice in state government, and...
10/06/2026

Rare Disease Advisory Councils (RDACs) give people impacted by rare diseases a meaningful voice in state government, and an opportunity to help shape policies and programs impacting the rare disease community. During this webinar, they will teach you how RDACs operate, and the different ways that advocates can advance and strengthen the work of a council.

Rare Disease Advisory Councils (RDACs) give people impacted by rare diseases a meaningful voice in state government, and an opportunity to help shape policies and programs impacting the rare disease community. During this webinar, we’ll teach you how RDACs operate, and the different ways that advo...

09/18/2026

A little practice with Dennis and CHARLIE PASSES HIS LEARNERS PERMIT! Congrats Charlie!!!

Hi Everyone, Sorry it's been a while since my last update. First I want you to know I accidentally had on monthly donati...
09/18/2026

Hi Everyone,
Sorry it's been a while since my last update. First I want you to know I accidentally had on monthly donations and I just turned that off. So please check to make sure it didn't set you up for a monthly donation.

The good news: Jeffrey just received a donated DynaVox Speech Device from the company. This device is commonly used by ALS patients and people on ventilators to communicate. Jeffrey uses his eyes to choose sentences, words, and letters to communicate. It is set up in Spanish and in English. He can now talk on the phone, communicate with his doctors and friends. We are hopeful that Jeffrey will get off the ventilator at some point but right now there hasn't been much progress so this will be very good for his mental health. Thank you to his speech therapist Abigail for arranging this!

The not great news. Jeffrey is still in the same circumstance as before. Still paralyzed and still vent dependent. Alicia and Jeffrey have very little money and due to that they cannot afford the $1800 a month insurance payments to get him into a spinal rehab facility that could help him. He also would not have an 'exit' plan as to where he could go when they release him. It's very sad.
So we are trying to get him back to Columbia and a hospital that can rehabilitate him there. The case worker at the hospital is honestly just trying to get him out of the hospital to anywhere. She would prefer a good hospital but seems willing to settle for less.

It's a difficult situation for everyone. Mostly Jeffrey!

He does have sensation in his body which is a good sign but without the advanced rehab the doctor doesn't think he will regain function. So all prayers are welcome. One unbelievable thing has already happened with the speech tech donation so anything can happen.

Thank you for caring about this family.

Kim

https://www.gofundme.com/f/support-for-spinal-cord-recovery-journey-for-jeffrey

PSF 2026 Family Conference professional photos  #3 by Wild and Tame Photo. Thank you Katie Per 😍and Cooper Elliott🥰.
09/13/2026

PSF 2026 Family Conference professional photos #3 by Wild and Tame Photo. Thank you Katie Per 😍and Cooper Elliott🥰.

PSF 2026 Family Conference professional photos  #2 by Wild and Tame Photo. Thank you Katie Per 😍and Cooper Elliott🥰.
09/13/2026

PSF 2026 Family Conference professional photos #2 by Wild and Tame Photo. Thank you Katie Per 😍and Cooper Elliott🥰.

PSF 2026 Family Conference professional photos  #1 by Wild and Tame Photo. Thank you Katie Per 😍and Cooper Elliott🥰.
09/13/2026

PSF 2026 Family Conference professional photos #1 by Wild and Tame Photo. Thank you Katie Per 😍and Cooper Elliott🥰.

09/13/2026

Riley Galvin speaking at the PSF Conference about the upcoming movie about Joseph Merrick.

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