14 years strong: Northern California patient support group
On October 20th the Northern California Amyloidosis Support Group celebrated it’s fourteenth year with a meeting held at Stanford’s Blake Wilbur Cancer Center.
Group leader, Dena Heath, a member of the ARC Board of Directors, has managed and facilitated the meetings since the first one in October of 2004. She began this group following the autologous stem cell transplant of her husband, Bill Finnegan, a Stanford patient diagnosed with AL amyloidosis in 2003. Dena sadly lost her husband in 2010, however she has not only stayed with the group, she is the heart and soul of it.
Dena’s inspirational and supportive leadership has led the group to grow from an average of sixteen patients in the early meetings to regular meetings with attendance often well over sixty. In the early years, it was difficult to find physicians with any expertise in amyloidosis. The Bay Area is fortunate now to have excellent amyloidosis teams from Stanford and UCSF Medical Centers. They give up their Saturdays to spend time with the patients and their caregivers; Drs. Michaela Liedtke and Ron Witteles at Stanford and Drs. Sandy Wong and Van Selby at UCSF.
Guest speakers at Saturday’s meeting brought another big crowd that included five new patients. Stanford neurologist/neurophysiologist Dr. Safwan Jaradeh, and head of the Stanford amyloidosis research team, Dr. Ronglih Liao and her very young and brilliant researchers, offered the medical and scientific expertise for the group, answering the tough medical questions and providing details on their research currently in progress.
Frequently sought after for speaking engagements in the rare disease community, ARC Founder and CEO Isabelle Lousada has been requested as a speaker by group members for several years now. She also joined the group to share her compelling personal story as an amyloidosis patient of over twenty years, the many accomplishments of the ARC in three short years, and collaborative strategic plans for driving the research that will have the greatest impact for patients. Empowering patients with knowledge and key information is a key focus of the ARC. Isabelle, and ARC director of development Catherine Geyre, presented the ARC patient programs engaging and enlisting group members to participate in them and support them. Excited to have Isabelle at the meeting some lucky members were able to snag selfies with her before she left to catch a plane back to Boston.
Several very creative members used them to raise funds for the ARC on their Facebook pages. For advice in using Facebook to raise funds for ARC: Contact us >>
Learn more about Northern California Amyloidosis Support Groups on their Facebook page