After his marriage to Kathy, new symptoms began adding to his medical file, including pain in his knees, shortness of breath, and worsening balance. With his continual decline and no answers, Kathy became vigilant with documenting and maintaining comprehensive medical files for Gary. Still, there were no definitive answers or treatments.

In 2004, Gary’s kidneys could no longer sustain and he was put on dialysis. In December, Gary’s son donated a kidney to his father with hopes of saving his life. Unfortunately, Gary’s health continued to decline. Kathy, feeling alone and helpless, put her strength and effort into doing all that she could to find help for her husband. She sent the meticulously kept records to universities, hospitals, and doctors around the United States searching for answers. Sadly, on July 3, 2007, Gary succumbed to his illness. Kathy kept her promise to never stop searching for answers. One month later the autopsy results returned. Diagnosis: Erdheim-Chester Disease.

Hope in Friendship

Over the years, although Gary was fighting a physical battle, Kathy was fighting a battle of her own. Not being knowledgeable about his illness, scared about what the future held, the unknowns, and feeling utterly helpless, left Kathy feeling alone. Kathy says “My family, a few doctors, nurses, and therapists were my lifeline. Everyone deserves a lifeline. No one should ever have to feel like that.”

Kathy’s perseverance through the trials and tragedy led her to what ECDGA is today. As Kathy was grieving the loss of Gary, she met two spouses online who were also dealing with their very ill husbands, who had been diagnosed with ECD. In April 2008, a few ECD caregivers, Carol, Kathy, and RuthAnn found each other via the internet. With a spirit of “If you build it, they will come” an online chat session was scheduled. Each shared their experiences, struggles, and difficulties for ECD patients and families. Geared with each other’s support, they began holding chat sessions to communicate with others who were touched by ECD. Kathy then arranged a teleconference with Dr. Razelle Kurzrock from MD Anderson and a few ECD patients. During this call, Dr. Kurzrock suggested starting a website to enhance communication. Quickly, Kathy reached out to a friend, Nick, to begin the process. Although Nick had no experience building a website, he graciously offered to take on the endeavor. The very first ECD website was established in 2008.

Mission to Find a Cure

With an established website and growing ECD community, patients and families encouraged Kathy to finally establish a formal 501(c)3 nonprofit organization. Alongside the parents of an ECD patient, who has since passed away, Kathy submitted the paperwork to make it official. On August 28, 2009, Erdheim-Chester Disease Global Alliance was officially born.

Where We Are Today

With the help of countless donors, volunteers, and medical professionals, the ECDGA has been able to support patients and research efforts around the world. Since its inception in 2008, the ECDGA has funded eight research projects and an ECD-dedicated patient registry, totaling over $700,000. This has resulted in effective treatment and mutation discoveries that have drastically improved the care for patients. Thirty-three ECD Care Centers have been identified to more effectively provide care to patients around the globe. Support has been provided to over 600 families from 60 countries through our website, events, awareness programs, and more.