Some advice to the HDSA as it searches for its next leader
We hope the future hire has a personal investment in the Huntington's cause
Who will become the next president?
I’m actually talking about the next president of the Huntington’s Disease Society of America (HDSA), the largest public nonprofit organization dedicated to improving the lives of people affected by Huntington’s disease (HD) through research, education, and advocacy.
Louise Vetter served as HDSA’s president and CEO from 2009 until July 12 of this year. While the society now has an interim CEO, Vetter’s departure creates a great opportunity for someone to lead a new era of innovation, support, and urgent action. As the husband of a spouse who’s gene-positive for HD, my interest in that next leader is personal.
What we want
Here are some thoughts on the person my wife, Jill, and I would love to see take the presidency. This person would:
- understand the power and passion of volunteers (who mostly have HD or who know or are related to someone who has it) by nurturing them so that they feel appreciated and supported
- encourage stronger collaborations across HD stakeholders and other advocacy groups to make sure HDSA isn’t reinventing anything, since time and funding are limited
- educate and mobilize the HD community to become advocates who demand that policymakers enact policies and procedures with a more proactive, holistic approach to treatments and genetic testing, all to help current and future generations
- push financial, medical, and employment protections for those who are gene-positive for HD and their caregivers.
How many times have you explained what HD is? Have you seen people’s reactions once they understood it? Jill and I want someone who doesn’t just understand HD from reading about it or attending lectures. We want someone who understands on a visceral and personal level how devastating HD is to people and their families. We want someone who will fight for the change that needs to occur so a cure can be found and so effective policies and procedures are enacted at the national and state levels.
Jill and I hope that the new leader has been personally affected by someone with HD, or has supported or given care to someone with the disease. They should be an innovative fundraiser who believes in financial transparency. And they should understand policymaking related to Big Pharma and the federal government.
Ideally, Jill and I hope that HDSA’s next president has the right combination of personal experience, professional success, and laser-focused commitment to the HD community so they can transform the society into an even more powerful force for change. HDSA needs a dynamic, bold, and inspirational advocate — someone who’s visionary and innovative, isn’t afraid to take risks and ruffle feathers, is willing to work tirelessly, and looks at problems and sees solutions.
HDSA, please, please, please don’t make the safe choice for your next leader. Make the right one.
Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Huntington’s disease.
About the Author
Comments
Alan Pfeffer
Carlos We should talk. I read your piece about the next leader of HDSA. My first wife had HD and my daughter died from complications of HD in May 2024 at age 43. I have been involved in the HD world since 1988, I served as the advocacy chair of the Albany NY HDSA Chapter, founding member, raised money, testified before the NYS Legislature and advocated on many issues. I was a key person in creating the specialized nursing home program in NY, served on the Dept of Health Advisory Committee. I have some thoughst to share on the issue of a successor to Louise with whom I knew and spoke with many times. I have attended conventions both in person and on-line.
Jason Richardson
Carlos, thank you for this article and the compelling message it sends. It resonates with me on myriad levels. In my 52 years of life, I have lost my grandmother, my mother, an uncle, an aunt, have 3 cousins who are all gene positive, and other relatives including myself and my sister whom are at risk but not tested. Admittedly and in full transparency, I have been simply too afraid most of my adult life to be an active participant in the HDSA. I attended the conference a couple times in Indianapolis (my home) in my early 20's when my mother and uncle were in late stages before their passing....and it wrecked me. I simply wasn't emotionally, spiritually, faithfully or even professionally strong and mature enough to face it head on.
I've spent the past 25+ years of my professional life in various pharmaceutical companies, and leadership roles. Do I think I am cut out to be a President? No, I do not. I am nothing if not self-aware.
At the same time, my wife and I have been praying for a while now for the Lord to guide me to what my true meaning and purpose in my personal & professional life is meant to be....and its not continuing to use my skills, energy and passion for the pursuit of profit in pharmaceutical manufacturing & distribution.
The time for me to help the HDSA and HD families by putting my life & business experiences and skills to doing everything I can to the ultimate goal of curing HD.
Again, I am not advocating for myself in any way for the President role. I'm simply reaching out to everyone who reads this saying that I am ready to move on from a corporate pharmaceuticals career and spending the rest of my career supporting the HDSA in a role that can truly impact lives.
Please let me know if you'd like to talk further.
Thank you,
Jason Richardson