With heavy hearts we are sharing that our founder and team champion John Ferman has peacefully passed away Tuesday night, November 11, 2025, surrounded by his daughters, Deanna and Deborah.
John founded Chronic Pain Partners/EDS Awareness in 2011 in an effort to raise awareness and understanding about EDS and related conditions after his wife Carol died due to misdiagnoses in 2008. The same year, his daughter Deanna was diagnosed with hEDS. Finally, they had some answers, but they came too late for Carol.
In order to prevent other families from suffering like his family did, John became a full-time volunteer and put everything he had into launching a new organization. At first, Chronic Pain Partners supported patient leaders to create support groups all over the US. John has helped set up more than 100 local support groups where people with EDS and their families could find resources but also feel validated and seen.
Over the decades, Chronic Pain Partners / EDS Awareness expanded their educational mission by inviting experts to participate in the first comprehensive webinar series for the EDS community, hosting a leadership conference, developing a CME Program to educate nurses and doctors about EDS, before finally starting a multimedia newsletter that features articles, videos and a podcast on EDS and related conditions.
John was a very direct communicator who knew exactly what he wanted. He volunteered tirelessly and showed his appreciation through grand gestures, for instance, by supporting people in need with donations or funding film projects from his personal accounts. He was often found by his daughters on the phone with EDS patients who called for support — he would listen, empathize, and offer resources. Additionally, John continued to personally mentor several support group leaders throughout the years and help them with their nonprofits.
John was humble and rarely divulged that he funded nearly a decade of work entirely from his personal funds, never taking a paycheck for his time. All profits from his former online store went directly to nonprofit operations. For all these actions, he was appreciated and respected by the whole community, including his team of volunteers.
John wasn’t one to complain, ever. When asked how he was doing, he always turned the focus toward the person he was talking to. Even though he was a loving father and lifelong caregiver, he never asked for anything in return. He was assertive and was always passionate and determined to find the best solution that served the community. Once John put his trust into a person, he was the most loyal, determined, dedicated leader. It wasn’t about himself; it was about what is best for the people he supported, which is a rare find these days.
John graduated from Piqua Catholic High School before going on to earn an electrical engineering degree from The University of Cincinnati. He worked his way into management positions at Keithley Instruments in Solon, OH and later at Harris Corporation in Mason, OH. He was proud of his credentials as a Professional Project Manager, IT professional and Distinguished Toastmaster, DTM.
He was always passionate about providing service to others, whether in the EDS world or as an active member of his church. He participated in Marriage Encounter, served as lector, mass coordinator and a Eucharistic minister.
John was an avid traveler, visiting places such as Egypt, Rome and Hawaii with his second wife, Kathy. He enjoyed working and keeping his mind sharp, but when he had down time, he was passionate about his Star Trek and Howdy Doody collections, which he loved to share with visitors.
John was a selfless, compassionate life-long caregiver and advocate and he spent all his time working hard to provide for the needs of his family and the community. He will be deeply cherished and missed.
His daughter and co-founder, Deanna Hamm, is dedicated to keeping his legacy alive through the work of Chronic Pain Partners/EDS Awareness.
Please share your memories and recognition for his life’s work in the comments.
In lieu of flowers, the family requests donations in John’s name to Chronic Pain Partners/EDS Awareness.
I am deeply saddened to hear of John’s death, I met him in person in 2014 along with many other fine people at the EDS conference in Houston.
When we talked I could tell how devoted he was to the cause, and I purchased from the store… And sometimes we would talk when I was making purchases.
I am wishing the best to the daughters now that they have lost both parents, but know because of them they will be forever in our hearts.
OT
When I was searching for answers, I found the Chronic Pain Partners website. The webinars helped me understand hEDS and work toward getting a diagnosis. I heard “my life” described. I am so thankful for the work John and Deanna have done to put this wonderful resource in place. My condolences to John’s family at this difficult time.
I never had the opportunity to meet with John personally, but I benefited greatly from his work for the EDS community and only first gained awareness of my condition because of his website. Prior to finding the Chronic Pain Partners site back in 2016, there was absolutely no other information about EDS on the internet and certainly not through my doctors. John inspired me to continue to work for a cure and he will be sorely missed. My heart goes out to his daughters at this time.
Serving under John is one of the highlights of my life. He offered me a voice in the EDS community I didn’t know I was capable of having. He lifted me up and encouraged me to keep going even when I wasn’t able. He was there for tearful, fear filled, conversations but also every celebration. John and I participated in multiple awareness events (Chiari, EDS, POTS) together. I watched him work tirelessly to create the first EDS Continuing Education program on the heels of over 100 webinars and an incredible website. He never stopped working. When I visited him in the hospital, he was still “working on emails”. God love this man. He was my friend and my mentor and I will miss him dearly. He will always hold a zebra shaped spot in my heart
My daughter was diagnosed with hEDS in 2014, not long after John founded Chronic Pain Partners/EDS Awareness. I am so grateful for his work in bringing EDS to light in the medical community as well as his work in supporting patients with EDS. He is an inspiration to me as I volunteer with my local EDS support group. My condolences to his family.
Although I didn’t know him well, I stumbled across his website while researching one night. I didn’t realize how newly formed his organization was at that time until just now reading this article. He was still very newly in to it, and yet he was very knowledgeable. Not only did he help me by producing the webinars and making information accessible, he also helped get our local support group’s information out…we had just started with myself and one other member.
When I spoke to him on the phone that one time, I remember how kind and compassionate he was. I had nearly died (due to misdiagnosis in 2010, like Carol) and had 2 small children I needed to raise with my husband. I needed answers for them, and John helped me greatly.
Today we have almost 2,000 members in our local support group. It’s been 15 years since my original dissections but I still remember my interactions with John fondly. He did so much to help so many and he will surely be missed.
There are not enough words to say how sad I am to learn of John’s passing. I remember when my daughter and I met him for the first time at the 2012 Northern Kentucky EDS conference. He had a table outside the conference rooms, along with Mrs. Tinkle, Bauerfiend, Silver Ring Splints company, the Dr with VEDS who sold the vitamin drink, and others. I felt sadness from him when meeting him, as he told us his story of his wife’s passing, and many years of suffering from EDS unbeknownst to them it was EDS, and then the breast cancer diagnosis. I have his original business cards from that day.
Those cards were a lifeline to me, as we were just learning about EDS. JOHN WAS A LIFELINE. John was a Godsend. I have tears that we have lost such a wonderful caring selfless person.
Where would we all be without John’s work? The videos have helped me so many times. There is no way I could ever know or learn the content on EDS Awareness from doctors and other health professionals without his website. He was gracious to all he encountered, me included.
I will always appreciate all that he donated of his time, money, and passion to make such a positive difference for so many. He worked tirelessly. Deanna, thank you to work along side your Dad, as his mission became much larger than a one person operation. I remember the website from the beginning. Now look at it! It is such a success! I don’t know how he convinced so many of doctors to contribute their time and knowledge, but whatever he said, it worked and we all benefited.
My greatest condolences and sympathy go out to Deanna, Deborah, and all who love him. I can only imagine how hard it is to lose a Dad like John. I am keeping you both in my prayers for comfort and strength. I will never forget him as long as I live, that is for sure.
My sincere condolences from here in England to all John’s loved ones on his passing. It saddens me that we never had a chance to meet as we’d talked about several years ago when my brother lived in Mason. What an incredible legacy he leaves; the whole organisation has gone from strength to strength over those years and many, many more people now know about EDS. RIP dear John.
I am deeply saddened by John’s passing. What a pioneer and incredible human being! We all can have deep feelings of gratitude for his Spirit and his Care.
I never knew John except through the newsletter. I read each one from beginning to end and sometimes more than once! Each time I saw it in my email, I looked forward to reading it and learning more. My daughter was diagnosed with hEDS when she was 21 years old. She is now 31 years old and people like John have helped us so much on this journey. I may have not known him personally but I am grateful for all that he gave to the EDS community and I will miss him. Linda
I am so very sorry to hear of John’s passing. He was integral in helping us start the Ehlers-Danlos Support Group of Silicon Valley. We have gone from 5 members to almost 700! He was the motivation to start our support group. John was always so friendly and willing to help in any way he could. May the family find your hearts full of the love he gave to so many.
Shocked to read about the passing of John Ferman. The information he shared helped me understand this journey of ours. My son passed at the age of 31 after receiving little information, and the inability to find providers willing to listen to and not discount his symptoms. John Ferman provide a tremendous service to our community. Thank you John and your family.
I met John at one of the EDS conferences (Houston, TX I believe) and was immediately impressed with him. He was a real “straight-shooter” who always focused on helping others, and it is clear from the article about his life that he was a tremendous role model as a father, care-giver, and leader. In terms of his leadership-it was second to none: the chronic pain partners EDS awareness site is one of the very best EDS resources out there, and I often go to it for advice, to listen to experts, or to simply look for gifts for my own EDS family members at this time of year.
John will be missed a great, great deal–thanks to all he has selflessly done for others. I can think of no more great a gift than the kind help that he has offered to so many EDS sufferers–his life will clearly have a long lasting impression on others. There is no greater goal in this world, in my opinion, than the one he clearly achieved: helping others who need it most.
What a tremendous loss for the EDS community! I have so much admiration and respect for John. If it weren’t for John, there wouldn’t be a Nebraska EDS Awareness and Support Group.
When I was newly diagnosed I blocked out Wednesday nights to watch the live webinars with the experts he lined up. It was a lifeline at a time when very little info was being shared about EDS and its comorbidities.
Condolences to his family. May we all work a little bit harder to spread awareness and support each other in memory of John.