Honoring Ashton Peter Saunders
The Ashton Peter Saunders Association for Prion Disease Awareness (APSAPDA) foundation is currently being established.
An Ongoing Story
My Thoughts & Feelings
Ashton died of CJD only after only 20 days from first onset of symptoms and presentation to the hospital. He ran 6 miles on December 23, 2024 and passed away one month later. Ash was one of the most determined, intelligent, successful, and driven people I know. He was in the best shape of his life and lived like there was no tomorrow. He was full of energy, kindness, generosity, and love, helping others he cared for and always lending a hand when needed.
I finally was able to figure out a way to share Ash's memorial program
February 1, 2025 was a bittersweet day as not only was it Ahston's 49th birthday but also the day of his funeral. We planned for a dignified, light hearted funeral followed by an Ash-like celebration of his life. I think we succeeded and he would have been happy and proud of us. Friends and family traveled from all over and there wasn't a one that I didn't know or had heard Ashton speak highly of. That says a lot about him. Strikingly, the room was filled with grown, respected, successful, handsome men, all in dark suits. Men from who were Ash's childhood friends, Rugby teammates, business friends, and just plain friends. I admire Ash for having known such great people and again, says a lot about him.
The after celebration of life, was just that. As I wondered around the room I heard stories I had never heard, heard laughter mixed with a few tears, I heard his name over and over, and it all made mw smile. I felt him with us there, as I know so many of you did, and I want to say thank you for you all for being there and helping me celebrate the wonderful man that he was.
Our next journey was to Newry, Ireland, the hometown of his mother's family. The memorial was at Clogh Church of Ireland and was so beautifully done. The singing throughout was amazing, the words spoken were kind, and the faces in the pews were smiling. His brother's eulogy was heartfelt and so true. Chaz, I will always remember your words to me. Thank you.
Of course, the Irish celebration was every bit as grand as the US version. Is there a better place than a castle? So Killeavy castle we went to enjoy great food, drinks, music, dancing and sharing memories. , for some, well into the night.
The Shehorn/Saunders'/McMahan families then ventured onto to Galway and the Cliffs of Moher. These beautiful cliffs was the last stop on Ashton and I's "Irish tour" list, so I wanted to complete the circle, so to say. The Cliffs did not disappoint and the time that was shared with our family was precious.
CJD Foundation (CJDF) Advocacy
CJDF Advocacy day on the Hill
I just returned from Washington, DC after attending the meeting and advocating for CJD awareness, funding, and recognition for research.
I was able to meet in person with TX Representative, Randy Weber and Congressman Brett Guthrie, KY, Chair of the House Energy and Commerce Committee. I dropped off additional information and requests with TX senator, Ted Cruz and TX representative, John Cornyn.
The meetings went as well as expected, but more than anything, this was a huge learning experience. The way that the government works, the inside goings on, the staff, the process, was fascinating.
I will continue to be in contact and to advocate for CJD.
CJD advocacy requests
One of the biggest asks for the CJD advocacy team was to continue funding of $8.5 Million for continued surveillance, diagnosis, and research. Currently these funds go to the National Prion Disease Pathology Surveillance Center (NPDPSC) and Centers for Disease Control (CDC)
The second ask was to recognize CJD as a neurodegenerative disorder, similar to Alzheimer’s Disease (AD) and Alzheimer’s Disease Related Dementia (ADRD). This ask is in light of the funds allocated to AD/ADRD in the amount of $4 Billion versus only $8 Million for CJD, as CJD has been placed into a separate category and does not have access to those monies.
What to do about funding
Now that I have returned from DC I have been reflecting on what was learned. I have learned that the previously promised $8.5 M hasn't even been instated. With that said, and with the history of the previous Trump administration, this funding is at risk.If we are not able to get recognition under the AD/ADRD umbrella. If that was to happen, hen we may have to rely on private funding to continue surveillance and research on these Prion and "Prion-like" diseases.
Not only does this funding provide for patients and suspected patients diagnosis and research, but more importantly, it helps to fund surveillance of the disease and potential "hot spots". This surveillance also emcompasses surveillance for Chronic Wasting Disease (CWD ), a similar prion driven neurodenerative disorder in cervids (deer, elk, and moose) which is similar to Mad cow disease in cattle. The occurrence of CWD in deer is on the rise and now affects 37 states. We do not know yet if CWD can pass to humans, but we didn't know that about Mad Cow Disease either. So I claim that it is of the most utmost of importance to continue surveillance at the least..........
We advocate for those affected
RESARCH
Education
Education
To aid in funding and development of methods and resources to support the scientific research behind the source and process of Prion Disease
Education
Education
Education
To develop and instill protocols to aid in diagnosis and supportive care for those afflicted or potentially affected by Prion Disease and other similar neurodegenerative disorders.
Support
Education
Support
To quickly establish a team to aid in emotional support and provide the tools to navigate through this disease process.
More Information
What is Prion disease and Creutzfeldt-Jacob Disease (CJD)?
Prion diseases are a group of fatal, neurodegenerative disorders caused by the accumulation of misfolded proteins called prions in the brain. Creutzfeldt-Jakob disease (CJD), Variant Creutzfeldt-Jakob disease (vCJD), Gerstmann-Straussler-Scheinker syndrome (GSS), Fatal familial insomnia (FFI), and Kuru are common prion diseases.
Donate or Volunteer
Join our team by donating to our charity now and as we grow we will need volunteers, friends, and family to help. This is just the beginning!
About Us
I am Danielle Shehorn Saunders, Ashton's wife and I am the founder and organizer for this cause and charity. I feel strongly about helping discover more about this disease and will be deeply involved with this charity,. With help from some of the most financially sound, honest, and driven businessmen, that Ash also called friends, we will put our raised funds to appropriate and smart use.
Contact Us
Have a question or want to get in touch? Use our contact form to reach out to us and we'll get back to you as soon as possible.
Updates and Recent Communications
"Sharing money to help others" is commonly referred to as donating or giving to charity; essentially, providing financial assistance to individuals or organizations in need, either directly or through a charitable cause you support. We had a big donation recently. All I have to say is Thank You. From the bottom of my heart, I am so thankful to have you in my life. Everything you say is true, but it's still too raw for me to think about. This charity is the reason I am able to function as a mom and a person; so you're contribution doesn't just help to better understand the disease Ash died of, but it helps me to heal as well. -d
CJD Foundation Advocacy Day
I thought I would share my current communications with the CJD advocacy group
Hello, I will be attending the advocacy meeting on Capitol Hill in March. My husband just passed from CJD in Houston, TX, on Jan 22, 2025 after presenting to the hospital with minimal symptoms on Jan 2, 2025.
I believe that I have a unique perspective on this process as I am a radiologist, a wife, researcher, and his caregiver throughout his hospital stay and was aware of his diagnosis very early on. This was based on his MRI, EEG, and otherwise completely negative workup.
In response to this realization, I started my own charity, the Ashton Peter Saunders Association of Prion Disease advocacy and am currently collecting funds in lieu of other offerings on his behalf.
I was by his side the whole 21 days from presentation to the hospital until his death. I have been able to see where we can aid, not only in diagnosis, but most importantly in the support of those affected and their families.
Also, I have been in communication with other professionals in the field, and feel that with their guidance, we can start to understand how this prion protein works, determine if there even could possibly be a treatment, and aid in accelerating the diagnostic process when challenged with potential patients with" CJD like" symptoms.
Thank you for your advocacy of this most horrible disease process.
Danielle Saunders, MD
This email was promptly responded to and I will be on a call with the foundation this morning, Feb 6, 2025
Learn More in our link about Prion Disease
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