HD Lighthouse had its origins in Jerry's personal effort to communicate information to his wife's care center. But in the years following her death, his website quickly became the internet site most frequently visited by HD people looking for information on Huntington's. And for reasons even he couldn't explain, hundreds came every day to his Lighthouse. And they kept coming, because what was communicated there was important to many in the HD community.
He followed research closely and got reports out that were often on his web site before the articles were available in print. And he posted all the work he could find that he thought relevant to the HD discussion: he posted articles from "mainstream" HD researchers the likes of Marcy MacDonald, Steven Hersch, (and many more). But he also posted the findings of others "outside the mainstream" like Cliff Steere and Sarah Tabrizi.
But Jerry's Lighthouse was much more than the "PubMed" of HD. He sought to educate himself and readers about newest research developments. He connected new reports to relevant old ones. He asked probing questions. And he tried very hard to relate research results to the perspective of patient and family care needs as expressed in his (sometimes irreverent) editorial comments.
And he was there for years, day after day, by the side of HD people. With intelligence, enthusiasm and diligence he encouraged and even prodded the Huntington's community to be more energetic and proactive in their own care.
It was perfectly clear that Jerry was a tenacious fighter with and for those with Huntington's. Jerry's life after his wife's death and his devotion to HD Lighthouse readers was the product of his many and varied abilities intertwined with his personal history of loss with the disease. No surprises here: This is similar to the lives of other HD heroes: Marjorie Guthrie (and family), Milton Wexler (and family), and many other passionate family workers for Huntington's.
All of these passionate workers are examples of Huntington's advocates.
The Meanings of Advocacy
HDSA describes Huntington's advocacy as "educating elected officials and medical and community leaders about the issues of genetic privacy, patient's rights, affordable access to essential care, and increased federal funds for research". All would agree that this is an essential part of advocacy in HD. Jerry did a lot of this kind of advocacy.
But Jerry went further. He took it to a consumer advocate level. He had informed opinions about the course of HD research and care from the patient and patient family perspective which he expressed through the HD Lighthouse. For many years his site was both the voice and safe haven for vocal patient advocates (including HDDW) in the HD community. There were not many other options available then to Jerry or others.
In recent years, the importance of consumer advocacy has come to be recognized by the National Institutes of Health (the government agency that funds most academic health research in the United States). They have an interesting document on their website entitled, Inclusion of Public Representatives / Participants in Scientific Peer Review which discusses the importance of recruiting and training patients and family members affected by (their) disease to take part in decision-making committees in funding and research for (their) disease: Because "the diverse community of people affected . . . (by their disease) . . . are key stakeholders in the quest to conquer (their) disease." They state that consumer advocates "play a vital role to set priorities and research agendas" for their disease.
Closer to home, in a very positive step for HD consumer advocacy, SET-HD has recently appointed and welcomed Jim Tretheway as patient advocate to their group. Jerry would have liked this: To have patient and family perspective openly acknowledged and added to the HD round-table discussion.
We are grateful to Jerry who introduced HDDW on his web page. He called our effort "Treatment Now". We call it Individual Therapeutic Trials in Huntington's Disease. But, by whatever name, this effort by affected families for affected families is one type of "consumer advocacy". It is an effort for HD people to have a voice in clinical trial development and design. And it is also an effort (in Jerry's words) for HD people to be "proactive" in our disease.
For Jerry's work this year and all the years before, we at HDDW salute and give him over-due honor. And for our part, we will try to pick up some of the tools of advocacy he used . . . and go on. It is not just appropriate but imperative that Huntington's "consumer" advocacy be allowed a greater voice as HD people enter clinical therapeutic trials.
And in this way Jerry will live on in the hearts and the minds of the hundreds of people he was fighting for.
God Speed Old Friend.