In the below videos, she discusses the past, present and future of the HDSA, as well as a little bit of insight as to why she continues to fight on behalf of families affected by this life-threatening neurological condition.
Vetter: This is a really exciting year for the Huntington’s Disease Society of America because it is our 50th anniversary as an organization. On September 18, 1967, Marjorie Guthrie received approval from New York State to announce the establishment of the Committee to Combat Huntington’s Disease, and now here we are, 50 years later, as a nationwide organization with an army of volunteers and families engaged in the fight. It’s really exciting to think about how much we’ve grown from literally 5 volunteers that met with Marjorie back in the 60’s, and were planning how to create change for Huntington’s families. Now, we really are this 50-chapter organization with so many families involved, and a movement that was really envisioned just by her inspiration and her stick-to-it-iveness.
When the organization was first founded back in the 60’s, it was just to create awareness of the disease. It was just to create a name for Huntington’s chorea, as it was known, so that the medical community could come together to begin to create change for families. Marjorie Guthrie was a one-man band – with her suitcase and her typewriter, she went around connecting families to doctors, doctors to scientists, and, ultimately, she traveled to Capitol Hill to raise awareness of the disease and create change so that we could become the research, education and advocacy organization that we are today. It was not an easy road; raising awareness of a rare disease is challenging and requires persistence to consistently advocate on something that doesn’t affect many families. Especially for hereditary disease, if Huntington’s disease isn’t in your family, you may not have reason to really think about it, or to advocate for those who are affected by the disease. Marjorie was constantly pushing that boulder uphill to create change in the neurology field with genetic counselors and with scientists to devote time and to creatively and compassionately create care for HD families.
Vetter: It’s really hard in the rare disease space, or really just the patient advocacy space, to recognize milestones. We think of all of the families that we’ve lost over the last 50 years, so we try to think about the impact that the organization, which began as the Committee to Combat Huntington’s Disease and became HDSA in the late 1980’s, to really think about what we’ve accomplished as a community. Today, there is a robust network of care centers. The HDSA Centers of Excellence are 41-strong and touching thousands of lives every year, which is really exciting, and I don’t think that Marjorie would have ever dreamed of it. The scientific community has come so far, and while we don’t have disease-modifying treatments for Huntington’s disease yet, they are something that are a tangible reality for a horizon that’s not too far away, and we do have two FDA-approved drugs to treat symptoms for Huntington’s disease, which again is a huge accomplishment when you consider the pace of science.
People today, with Huntington’s disease, are living more comfortably. There are tools at the disposal of the medical community to help manage cognitive and behavioral symptoms, and to manage the chorea, so these are all quality of life improvements that could not have been envisioned 50 years ago. I think about Marjorie Guthrie as a philanthropic icon – someone who really envisioned a better day and was committed to doing something. To look at the organization and the community today and how much we’ve accomplished, I know she’d be inspired and proud.
Huntington’s disease families are always aware of the “clock on the wall,” and the “calendar.” Each passing day creates greater risk, more complicated symptoms and the onset of the disease. For HDSA, we’re constantly working against that clock and racing to bring science forward as quickly as we can to make sure that every family in the United States has access to a truly expert HD professional. For us right now, we’re continuing to push the expansion of our Centers of Excellence program, and to get the HD Parity Act passed on Capitol Hill, which continues its charge forward, and to bring disease-modifying treatments forward. We won’t stop until every family is able to stop the course of this disease.
For more on the HDSA, visit the organization’s website: HDSA.org.