CRPS Warriors Memorial

RSDSA is highlighting CRPS Warriors we have lost over the years.

If you have a loved one you would like added to this memorial, please send us an email at [email protected].

CRPS Warrior’s Name	Sunrise	Sunset	Their Story
Katie Marie Carkhuff Clarno Thompson		2024	Submitted by her loving mother, Becky Gleason.
Wilson Hulley	November 1, 1937	July 28, 2023	A nationally known advocate for people with disabilities both before and after his accident, Hulley has held numerous senior management positions in the private and public sectors along with administrative jobs in government. He worked on Richard Nixon’s presidential campaign and served as executive assistant on disabilities to Presidents Ronald Reagan, Bill Clinton, and George H.W. Bush. Learn more about Wilson Hulley at https://bit.ly/3tnceKC and https://bit.ly/3E4U1Dr
R. Steven Shisler, Esq.	March 20, 1953	June 27, 2023	Steve Shisler had CRPS for 50 years as a result of a motorcycle accident in his youth. He had a special interest in litigating on behalf of people with CRPS. He practiced law in Pennsylvania and served as Secretary of the Board and on the Executive Committee.
Maribeth Kreusser	April 27, 1957	May 21, 2023	Maribeth fought a 30 year battle with CRPS due to a knee injury after skiing. After countless surgeries and procedures, drugs including opiates and FDA drug trials of sea snail venom, a morphine pump, work with faith healers in Brazil and Mexico and numerous pain clinics throughout the country, Maribeth is finally at peace.
Hannah Bernard	October 02, 1996	December 27, 2015	Hannah was an indomitable warrior. She courageously fought CRPS, Ehlers Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, Gastroparesis and Dystonia for over 10 years. She was smart, funny and strong. She never gave up and appreciated every day.She wanted to educate and spread awareness about these rare disorders and fought for quality of care for all Zebras.Her unwavering strength, determination and kindness made a difference in the world. – Janet Bernard
Preston Lee Downing	July 22, 1996	May 29, 2021	Preston’s life was a journey filled with love, joy, laughter, and some adventures. He was incredibly caring and generous. He loved going on family trips including Disneyland, Las Vegas, and Hawaii. He always lobbied for room service in the hotel and had champagne taste with our beer budget. He was in Cub Scouts and Boy Scouts, which gave him the opportunity to explore the outdoors. Preston was not exactly a ‘wilderness kid’, but some of his favorite outings were rafting, swimming at Catalina Bay, and summer camp. Preston adored his older sister and they were inseparable as children.
Andrea L. Gianopoulos	December 15, 1982	February 11, 2009	Andrea was a Warrior from the day she was diagnosed with RSD at 13. Over the years, Andrea did whatever she could while she could to keep active. From marching band to college to starting Fighting4US, a non profit dedicated to helping others, Andrea never gave up. 2002 ketamine in Germany, 2009 ketamine in Mexico where her body decided she had enough. We miss her forever and ever and even longer than that.
Rusty Hutchinson	1952	2019	After being diagnosed with RSD in 1996, Rusty was one of the first people I met who had RSD/CRPS. Rusty had lost his arm in an accident involving a piece of farm machinery. He ended up with RSD in that arm. While I was planning a 5K for RSD/CRPS awareness in our town in 2019, Rusty passed away from cancer. – Deborah Robbins
John Michael Molinares	November 5, 1978	June 16, 2021	Even with a debilitating health condition, John never backed down from a fight and continuously fought to raise awareness for CRPS/RSD. He was an advocate for the Michigan chapter of Team Tenacity, and went before Senators, Congressman, and Michigan State Delegates to push for increased recognition and funding for CRPS/RSD.
Della Ferguson Novick	July 27, 1943	September 24, 2019	My sweet sister. A woman of wisdom, strength, and courage. Put through the fire and tempered to become A PERFECT GEM. She was my only comrade in a war that is invisible to most of the world. I will carry you close in my heart. ALWAYS. – Janice Matsumoto
Hunter Lia Zager	1987	2016	I am forever grateful to have known Hunter. She was the bravest and strongest person I have ever known – giving so much of herself and always helping others – when her pain was unbearable. She taught me so much about RSD/CRPS, and was such an inspiration to me and so many others. The world was truly a better place with her in it. ❤️ – Kristin Crosley