We are a group of SDH-deficient cancer patients, family members, or caregivers. Our Mission is to promote SDH-deficient cancer research. The SDH-deficient gist tumors have a different biology than "regular" c-KIT/PDGFRa mutated gist and thus are in need of a unique treatment plan. We seek to help active SDH-deficient cancer researchers in obtaining fresh or viably frozen tumor tissue from patients having surgery, to educate patients on the importance of donating their tumors to researchers who are working on cell lines or mouse models and hopefully provide some funding to faciliate these goals.
We are an all-volunteer, patient-centered, grassroots group. Many of us have an inherited SDH DNA mutation that affects other family members. We are dedicated to doing what we can to find a cure, which currently does not exist.
We are a (501)3 non-profit organization.
Becky Owens is a founding member of the SDH Cancer Research Advocates.
She received a degree in Physical Therapy from West Virginia University and worked as a physical therapist for 23 years. In 2001, she was diagnosed with GIST at the age of 41. She serves on the executive board of GIST Support International (GSI) and as an Advocate Member of the NIH Pediatric and WT GIST Consortium.
When Becky was 7 years old, her mother died from from medical events related to an SDH-deficient pituitary tumor. After much searching, 4 surgeries and 4 targeted therapies, in 2016 Becky learned that she had an inherited SDHA deletion driving her cancer. In her quest for answers for herself and others with rare SDH-related tumors, she co-founded the SDH Cancer Research Advocates.
Becky lives in Hagerstown, Maryland with her husband Rich, and their Bernese Mountain Dog Fuji. She is forever grateful for their love and support. She can be reached at: beckyowens130 @ gmail.com
Cathy Freeman is a founding member of the SDH Cancer Research Advocates.
She is also founder and administrator of Facebook Private Support Page: SDH Cancer Support Group - Gists, Pheos/Paras, RCC, rare tumors.
She attended NIH Pediatric Clinic 2013 as a patient, as well as attending Dr. Pacak’s SDHB deficient paraganglioma protocol and Dr. Stratakis’s inherited diseases DNA studies.
She was diagnosed with Gist in 2008 at age 50 when a 5 cm tumor was discovered in her stomach with a bleeding ulcer on it. In the last ten years she’s had four surgeries and currently has six tumors.
Her college degree from UCSD is in theatrical design which landed her first job at the Oregon Shakespeare Festival in Ashland, Oregon. There she met her husband Brian. Thirty-five years ago she and Brian opened Crystal Castle Graphics and have worked together as fellow graphic artists ever since. Brian is also a folk/Celtic musician who has been performing for over forty years.
When Cathy was first diagnosed with SDHB deficient gist she wrote a memoir about growing up with a father, George Sherman, who was Head of Publications and Comic Books at Walt Disney Studios, A Disney Childhood: Comic Books to Sailing Ships. When Cathy was a teenager her father died of a rare cancer called paraganglioma. When her aunt also died of paraganglioma she realized it could be an inherited cancer. The connection between a gist diagnosis and paraganglioma is a gene mutation, SDHB, Complex II of the Krebs Cycle. Cathy aggressively looked for a research study that would test her for an SDHB mutation and she was correct when the results came back with the SDHB mutation C189F.
Cathy always thought in the thirty-five years between her father’s death and her diagnosis that a scientist would have found a cure. She was surprised to learn that many have tried but there are still no successful treatments. She was impressed by how many who’d been working in labs for years were willing to answer her emails and help her understand that it is a very complicated DNA mutation and they “don’t know” why tumors develop or how to stop them. Thus SDH-RA was founded to help researchers with whatever needs they may have from obtaining tumor tissue to funding their research if possible. Cathy mentors many patients with SDH diagnosis and can be found at cathyfreeman @ gmail.com
Article in Conquer Magazine: https://conquer-magazine.com/issues/2018/vol-4-no-3-june-2018/705-a-disney-childhood-until-cancer-enters-stage-left
Phyllis Johnson Gay joined SDH Cancer Research Advocates as one of the founding board members.
Her motto is "find the blessings in the middle of the messes." Phyllis has fought to find answers and a cure for her daughter’s SDH deficient GIST (Carney Triad) since the diagnosis in 2004. In 2007, Phyllis started an online support group with the help of GIST Support International for pediatric GIST patients and their caregivers with this rare cancer as a means to help others while seeking support for herself and her daughter. It has served a great service to her and to many others. She continued her involvement as an executive board member at GIST Support International, and she was asked to join the Pediatric Wild type/ SDH deficient consortium at the National Institute of Health as an Advocate member. Phyllis has used her medical knowledge as a Physical Therapist to help navigate all of the medical maze that exists in this disease. Although now retired, Phyllis is thankful daily that she has the experience and knowledge that came with her degree and 30 years of working.
While Phyllis’ daughter has had over 30 surgeries to remove tumors since 2004 with many hospitalizations and continued battles with pain and reoccurring tumors, Phyllis continues in awe of her daughter. Her daughter, now 25 years old, is pursuing a degree as a Physician Assistant. Phyllis and her daughter both choose to collect and treasure memories instead of things with their family. They both have become travel junkies to facilitate those memories!
Tracie Joyner is a founding member of the SDH Cancer Research Advocates.
She had a rare tumor in her teens (successfully removed) and has a son with SDHB-deficient GIST. She brings excellent research skills as an assistant to an attorney and is one of the kindest people you'll ever meet.