Tuesday, February 21, 2012

It’s time for the Huntington’s community to speak out – and HDSA is listening

The HD community has a golden opportunity to both strengthen and shape the future of the Huntington’s Disease Society of America (HDSA) and its mission of care and cure – a mission that some grassroots advocates have seen as not fully encompassing their concerns and struggles.

With a deadline of February 24, a task force of the HDSA Board of Trustees seeks feedback on a proposed strategic plan for the years 2012-2016.

“Before the Plan is finalized and implemented, we want to receive input from all interested members of the community,” HDSA CEO Louise Vetter wrote in a letter posted on the HDSA website. The letter contains a link to the plan. A feedback form is located at the end of the letter. Click here to read the letter.

“The Strategic Planning Task Force spent hundreds of hours over 18 months conducting data review, community surveys, and holding discussions with individuals from every constituency of the HD community,” Vetter stated in the letter. “They used this information to assess the business of HDSA and develop this Plan for the growth of the Society, so that we can provide more services to families affected by HD and fund more research that can improve our knowledge base on HD and therefore lead us closer to effective therapeutic interventions.”

The task force included Vetter, HDSA Board of Trustees Chairman Donald Barr, and four other board members.

HDSA CEO Louise Vetter and Board of Trustees Chairman Donald Barr (photo by Gene Veritas)

As the 2011 HDSA Person of the Year and a former board member of the San Diego chapter, I urge everybody in the HD community to become familiar with the plan and provide comments. While the Board of Trustees and the HDSA professional staff in New York City perform key leadership functions, the chapters and volunteers are the lifeblood of the organization.

We are HDSA, and it’s up to us make our voices heard.

Below I present an outline of the plan as well as my own suggestions for improving it.

Plan introduction: balancing care and cure

The first eight pages of the 39-page document provide an overview of HDSA’s values, mission, and community.

As the document states, the organization’s last strategic review took place in 1998 – well before dramatic advances in both communications and science. Since then, scientists have come much closer to understanding HD. We now stand on the verge of revolutionary clinical trials.

It’s important to point out that the CHDI Foundation, Inc., the so-called “cure HD initiative,” which spent approximately $100 million in 2011 and has a far more narrow focus than HDSA, has emerged as the non-governmental sector leader in developing potential treatments (click here to read more).

HDSA’s current budget is approximately $8.5 million. According to the 2009-2010 annual report, 26 percent of the budget went to family services, 20 percent to fundraising, 20 percent to chapter development, 17 percent to education, ten percent to management and general expenses, and just seven percent for research.

Those amounts are a far cry from the early 2000s, when HDSA annually spent millions on research.

Vetter told me in an interview in May 2011 that HDSA will strive to increase its budget to as much as $20 million. For now, however, the proposed strategic plan aims for more modest annual increases of five percent, with a goal of raising $10.2 million in 2016.

Despite CHDI’s massive investment in research, the HDSA plan proposes a continued commitment to both “care” (services, education, and advocacy) and “cure” (research). As I discuss below, HDSA aims to launch a new research program, which would complement research done by CHDI and also the Hereditary Disease Foundation (HDF).

I agree that HDSA should continue to sponsor research, but I believe it should also invest more in other areas.

In the past, HDSA has primarily supported basic research, that is, research that leads to a deeper understanding of the disease but not necessarily to immediate application as a treatment or cure. CHDI now focuses on what is called the “treatment pipeline,” the search for ways to delay or halt the progression of HD using the knowledge of basic research created by others but also through its own projects.

Of course, in this fast-paced era of biotechnology, the line between basic and applied research has becoming increasingly blurred. Frequently, scientists can quickly turn new basic knowledge into a strategy for a treatment or cure. In this respect, the HDSA plan for continued research makes sense. CHDI and the HDF will continue to perform the bulk of the research, but HDSA-sponsored research will likely turn up new clues and perhaps even potential treatments.

The more brains we have working on treatments and a cure, the better our chances of success.

A community service organization

Crucially, the strategic plan recognizes the key part played by HDSA’s 21 Centers of Excellence in providing assistance to HD patients and their families and serving as a focus for patient research and clinical trials. The creation of the Centers has given greater visibility and some additional funding to local HD clinics around the country, practically all of them associated with universities. Annually the Centers each receive about $50,000 in support from HDSA.

“The Society will seek to enhance the Centers’ role in clinical research by creating linkages with the new research program,” the document states. “Imagine if a basic scientist who was used to testing hypotheses in mice could finally test a theory on human blood samples made possible by a Center of Excellence?”

The plan involves expanding “care” from “family” services to “community” services.

“HDSA is committed to offering programs that can have the broadest impact and affect the most lives,” the document states.

The meaning of expanded care

In my opinion, the shift in emphasis from “family” to “community” stands out as the most important aspect of the plan. In light of CHDI’s emergence, I believe that HDSA can best support the cause by focusing on services to HD families, raising awareness, and recruiting individuals for research studies and clinical trials.

Indeed, the second part of the plan (pages 9-13), which outlines the seven major goals of the strategy, begins with “Goal I: Build an HD Community-service organization.”

To achieve this goal, the document sets forth four “core strategies”: 1) expanding access to clinical care; 2) enhancing social services and support resources; 3) improving access to long-term care facilities skilled in HD; and 4) increasing access to counseling.

To implement these goals, the plan proposes a series of actions. I’d emphasize two: the strengthening of the Centers of Excellence and the “development of a regional network of social workers to augment the existing National and Field-based social workers.”

The staffs of the Centers and social workers regularly come into close contact with the patients and their families. They provide the vital services and first-hand information that families so desperately need in the fight against HD. And, as HDSA recognizes, the Centers stand in the best position to help implement clinical trials.

The next six goals support the idea of community service: support of HD research, removing barriers to quality care (legislative advocacy), communication, expansion of the volunteer base (click here to read my previous analysis of this question), operating in a fiscally sound manner, and fundraising.

Trying too hard to catch up on research?

Despite the emphasis on community service and the clear movement away from pitting care against cure, the document left me with the strong impression that the task force has thought more about questions of research and less about other organizational needs such as advocacy and volunteer recruitment.

While the task force established yearly goals for all seven of the major strategic goals, it included an appendix only for research – a three-page synopsis of an HDSA research planning meeting held in April 2011. In this section (pages 37-39), I could sense the renewed commitment of HDSA to make a difference in HD research.

There and elsewhere in the plan, the task force mentioned the need to hire a “medical-scientific director to oversee and coordinate research programs.” The director would help lead HDSA’s efforts to educate the community about the importance of clinical trials and “deepen our partnerships” with other organizations seeking treatments and a cure.

The plan seems solid, in part because it gives the medical-scientific director the task of education on clinical trials.

Furthermore, the document reveals that the national board aims to end a difficult situation of delinquent payments to researchers – a situation that practically brought the Coalition for the Cure research program to a halt. According to the 2009-2010 annual report, the seven percent of the budget that backed research amounted to just $370,000. In informal conversations, I have heard that HDSA spent practically nothing on research in 2011.

Fortunately, CHDI’s large investment in research has counterbalanced HDSA’s diminished role.

However, precisely because of CHDI’s huge role in research, grassroots volunteers might wonder why other areas of the strategic plan did not receive a more detailed plan of action, not to mention the possibility of hiring, when possible, additional specialized personnel in areas such as advocacy and volunteer recruitment.

Local needs

As I wrote previously, “I believe it’s implicit that the chapters and volunteers, as usual, will need to take the initiative locally” with respect to volunteer recruitment and other activities.

To cite just two examples of local need: HDSA should increase funding to Centers of Excellence for programming and staffing, and the all-volunteer chapters could also benefit greatly from increased clerical and other paid staff support.

As someone who came to HDSA through a support group, I would have liked to see a more detailed discussion of these groups’ importance.

I agree with the plan’s assertion that “personalized support, like financial aid or case management, for every family facing HD is not realistic for the Society given our budget.” Nevertheless, I definitely believe that, along with our families, HDSA should brainstorm on how to help relieve the tremendous and often financially crippling care burden of HD. One possibility frequently mentioned in HD Facebook discussions involves support for local, private assistance initiatives. HDSA could partner with these initiatives and help raise their profile.

As a disease community, we need to become more creative in these areas – including better information for families seeking specialized nursing home care for their loved ones.

Communications and advocacy

I believe that the plan overreaches by aiming to make HDSA the “premier communicator of HD information.”

The community obtains information from a wide variety of sources. Hundreds (if not thousands) of families rely on HD Facebook communities and other sources of HD news. So far, HDSA’s presence on Facebook is limited, although the strategic plan briefly mentions the need to expand the use of the social media for advocacy and fundraising. HDSA might also promote a communications network in which it can play a key coordinating role.

In conjunction, it could form a kind of “HD news service” in which volunteers could report on HD issues in their local communities and share news items and articles with the national organization.

While HDSA has made important strides in advocacy, I believe the organization should invest even more in this area and assure long-term continuity of specific programs and initiatives. In recent decades, the organization has too often started from scratch, leaving the volunteer base confused and making advocacy inefficient. The organization also should promote greater awareness of the history of HDSA as an entity founded by a great HD advocate – Marjorie Guthrie – and partly dedicated to the memory of another great advocate of humanity – her husband Woody Guthrie.

Optimism – if we participate

I am optimistic that HDSA can reach these many goals and inspire people to become active.

We need to keep in mind that HDSA has limited resources – but also that, ultimately, we grassroots activists, volunteers, support group members, chapter board members, relatives, friends, and supporters are the organization’s most important resource.

To its credit, the HDSA Strategic Planning Task Force has defined its plan as an “active, living document” to be “reviewed regularly to revisit timelines, push progress and help the Society evaluate opportunities.”

Let’s not pass up this unique opportunity to express our opinions and make a real difference in the future of HDSA.

In my previous article, I mentioned that the A Physician’s Guide to the Management of Huntington’s Disease was not available online. HDSA will put the guide online following the 2012 national convention, June 8-10, in Las Vegas.

Thursday, February 16, 2012

The quandary of denial in the Huntington’s disease community (Part II)

The fear of confronting the devastating, incurable, and ultimately deadly symptoms of Huntington’s disease, coupled with its terrible stigma, causes many in the HD community to go into denial. They avoid participation in research trials and other activities crucial for combating the disorder.

In Part I of this two-part series, I revealed how my own family’s struggles with HD highlight how denial hampers involvement (click here to read more).

“How do we untie this terribly complex knot of denial?” I asked. “I am in a quandary about how to act – and to overcome this problem that threatens our march to treatments and a cure.”

Here I propose some practical strategies for overcoming denial at the level of the individual, the family, and the larger HD community, including both physicians and the main organization that cares for HD families.

The struggle within

The fight against denial and for participation begins within us.

In the words of Dr. LaVonne Goodman, the founder of Huntington’s Disease Drug Works and physician to several dozen HD patients, we in the HD community “suffer not just from society and intra-family struggle – but also from internalized stigma that we have ‘learned’ from others, and incorporated into self.”

We need to block this internalized stigma from leading us into denial and preventing us from fighting both the disease and the external stigma.

Dr. LaVonne Goodman (photo by Gene Veritas)

On January 30, Dr. Goodman published a detailed article that identifies stigma as an actual “component of Huntington’s disease.”

“Stigma drives HD families into the closet where we suffer as a marginalized part of society,” Dr. Goodman wrote. “Further, the fear of stigma likely prevents those with early disease from seeking medical care, as it does with mental illness or from signing up for clinical trials. Study has shown that when society becomes aware of HD family status, individuals can experience discrimination in employment, housing, medical care and social relationships. Stigma is damaging even before clinical diagnosis, negatively affecting the quality of life for these individuals and their loved ones.”

Dr. Goodman’s article is a must-read for the entire HD community.

Why care?

We must always remember that we each have an individual responsibility in fighting HD and making others aware of our plight.

“If we don’t speak up for ourselves, why should anybody care about us?” Bill Johnston, the public relations director of the San Diego Chargers and the husband of an HD patient, once told the San Diego support group.

Exercising the power of our own voices helps rebuild our self-esteem, so easily wounded by the depressing symptoms of HD and the terrible stigma. It also builds badly needed awareness about a disease still largely unknown to the public.

Bill Johnston carrying the Olympic in 2002 to raise HD awareness (photo by Mike Nowak)

Renewed participation

While we cannot force people to come to terms with their denial and join the cause, we can set an example by daily renewing our own commitment to participate.

That commitment can include attending a support group or volunteering for the local chapter or affiliate of the Huntington’s Disease Society of America (HDSA). (Many other countries have their own HD organizations; click here to learn more.)

HDSA chapters need people to help with so much: fundraisers, advocacy, communications and media contacts, support groups, the Centers of Excellence for Family Services and Research, volunteer recruitment, education and awareness-building, and “diplomats” to provide information about clinical trials. No prior experience is necessary, and individuals of all ages and skill sets can pitch in.

Helping shape HDSA: you have till Feb. 24

In recent years, HDSA has experienced a financial and organizational crisis, and some members of the HD community have criticized it for an apparent lack of concern about the problems of the everyday HD family.

HDSA recognizes such complaints and aims to be more responsive. HDSA CEO Louise Vetter and the national board of directors want the HD community’s feedback on a proposed five-year strategy for increasing the size, reach, and impact of the organization.

You can find the link to the proposal and read Vetter’s letter soliciting input from the HD community by clicking here. The deadline for comments is February 24, 2012.

Bolstering HDSA, breaking denial

In my next article, I will comment in detail on the HDSA plan. Here I want to highlight the HDSA goal of bringing “new folks into our fight” through an increase in the number of volunteers.

“Many organizations for diseases as rare as HD are many times our size,” the proposal states. “It is imperative that we increase our capacity so that we can do more, fund more research and accelerate the accomplishment of our vision – a world free of HD.”

HDSA wants to train and “deploy an ‘army of HD’ers’ to give voice and action to HD causes and needs.” To do so, over the next five year HDSA aims to increase the number of chapters and affiliates from 45 to 55. It also aims to add at least 200 new volunteers per year. The plan states that HDSA will support the volunteer base “with resources,” presumably in the form of dollars and staff support.

The plan doesn’t specify exactly how HDSA will reach these goals. I believe it’s implicit that the chapters and volunteers, as usual, will need to take the initiative locally.

Nevertheless, the national board recognizes the need to restore some confidence lost in recent years. It wants to improve the bonds between the national office and the chapters and affiliates. Specifically, it proposes “to build a strong, ongoing dialogue … that fosters a ‘we’ and not ‘us vs. them.’”

By including input from the community and emphasizing dialogue, the planning process presents a golden opportunity for the HD community to both strengthen and shape the future of HDSA and its mission of care and cure.

By bolstering HDSA, we can help encourage the inactive members of our community to break through their denial.

Young people facing HD can also join the recently launched Huntington’s Disease Youth Organization.

The doctor’s impartial role

Breaking down denial requires education about the causes and symptoms of HD, genetic testing and discrimination, family planning, medical care and caregiving, and a wide range of other factors.

The educators in this process are multiple: HDSA, the Centers of Excellence, the support groups, the various HD Facebook groups and other web-based initiatives, social workers, genetic counselors, psychologists, and, most importantly, doctors and other medical personnel.

A doctor is often the first person to assist an individual or family confronting the onset of symptoms or learning about the disease for the first time.

Doctors, probably more than anybody else, can provide hope.

And they can prevent people from going into denial. People respect doctors, and doctors provide an impartial assessment of a person’s medical condition. People are much more likely to listen to a physician than a family member or activist with whom they’ve tangled over HD.

So, doctors need to be properly informed about HD.

A helpful guide

HD specialists and neurologists familiar with HD can skillfully diagnose, treat, and counsel HD people. However, because HD patients form a relatively small group (an estimated 30,000 individuals in the U.S.), most doctors know little, if anything, about the disease.

HDSA has sought to educate doctors about HD by publishing A Physician’s Guide to the Management of Huntington’s Disease, now in its third edition (2011). Authored by four respected HD specialists, the guide provides an overview of HD symptoms, genetic counseling and testing, treatment and care, juvenile HD, management of late-stage HD, and HD research and clinical trials.

Written in a non-technical style, the guide is an invaluable tool to educate the public.

A free flow of information

HDSA provides free copies of the print guide. However, it limits them to one per family.

Furthermore, the publication is not available online, because HDSA aims to track the physicians requesting the publication as part of the HD educational process.

A number of people in the HD community believe that HDSA should make the guide available as a downloadable PDF. Indeed, some are puzzled that, in the era of the Internet and the e-book, HDSA has not facilitated access to the publication.

I have participated in many conversations about HD on Facebook in which people ask very basic questions about HD, as well as sophisticated ones about medical matters. It would be enormously helpful to point to the document online.

In visits to my primary care doctor for non-HD matters, I’ve noted how he relies heavily on not just the health plan’s computer network, but the wider web.

Imagine a doctor seeing his or her first HD patient who has to call HDSA for a copy of the guide rather than download it.

The freer the flow of high-quality, doctor-generated information about HD, the greater our chances at ending stigma and denial.

(In a future article I will review the Physician’s Guide.)

Increasing visibility

Because doctors form the front line of diagnosis and treatment, we in the HD community must advocate the bolstering of the HDSA Centers of Excellence, support groups, and HD educational events such as the annual convention of the Northern California chapter.

We also need to participate in HDSA walks and other fundraisers that emphasize raising awareness among the general public. These events may not raise as much money as galas or other big events, but they provide a huge symbolic impact in the local community.

The more visible we can make HD in the local community, the greater the chance someone in denial might be brought to reflect on his or her predicament and the effort to defeat HD.

Then we can build a stronger movement and take one step closer to the goal we all strive for: the end of HD.

Thursday, February 09, 2012

The quandary of denial in the Huntington’s disease community (Part I)

The natural human tendency toward denial presents one of the biggest obstacles to strengthening the Huntington’s disease movement, including the recruitment of individuals for the observational studies and clinical trials crucial for developing effective treatments and a cure.

How do we more proactive members of the HD community influence those living in denial? How do we convince them that they need to inform themselves about HD and join the effort to defeat it?

I have wrestled with these important questions, as well as my own multiple forms of denial, ever since learning in late 1995 that my mother had HD and that I had a 50-50 chance of inheriting the condition. My denial, and feelings about others’ denial, became dreadfully more complex after I tested positive for HD in 1999.

I remained deeply in the “HD closet” for many years because of the fear of genetic discrimination, but became vocal via this pseudonymous blog. In mid-2010, I began to speak publicly about my condition.

A year ago, I “unmasked Gene Veritas” and revealed my story to some 250 prominent scientists and other observers at the Sixth Annual HD Therapeutics Conference, sponsored by the CHDI Foundation, Inc., informally known as the “cure Huntington’s disease initiative.” I made other presentations at my local support group, an HDSA chapter convention, a pharmaceutical company aiming for a revolutionary clinical trial, and a symposium on clinical trials.

Now I want to tackle the problem of denial head-on.

Yes, we rely on denial to face the daily fear of HD symptoms, as well as the stigma accompanying the condition, but we ultimately must overcome it if we are to win the battle against HD.

And, yes, each family situation differs. In some cases, it may be easier than others. But by looking at my own family as an example, I aim to analyze some of the causes of denial, how it plays out in HD families, and how it maintains its insidious grip.

A powerful firewall

Denial often shadows my family life.

Despite my dramatic exit from the HD closet, I continue to maintain a firewall between, on the one hand, my HD activism and, on the other, the workplace and my neighborhood.

I would like to break down the neighborhood barrier, but my wife, who has lovingly stood by me through the entire trauma of the HD experience, has resisted the idea of expanding my advocacy beyond the HD community

After being named the 2011 Person of the Year of the Huntington’s Disease Society of America (HDSA) last June (click here to read more), I wanted to solicit an article in the community newspaper as a way to build awareness and support for HDSA locally. I hoped the prestige could help take my advocacy to a new level.

My wife said no. “I don’t want this in our house,” she stated adamantly, referring to HD and all of its implications, including the impact such a newspaper article might have on our daughter, now in her first year of middle school.

My daughter knows that I am gene-positive and that she tested negative in the womb, and she even has read some of my blog articles. However, my wife does not want to see her constantly exposed to HD, and she wants her to enjoy her final moments of childhood without having to worry about my health and the future impact on the family of HD when my inevitable symptoms begin.

I respected my wife’s wishes – I know she will shoulder the burdens of HD in the long run – but I was deeply frustrated. “This is such a HUGE accomplishment in my life,” I wrote in my blog notes at the time. “The greatest recognition I have received to this point – one that is about changing the world. And I can’t celebrate it!! Because of the stigma. I need to talk more, get HD out there more.”

My wife initially didn’t want to display my HDSA award plaque in our hallway of family photos, but she later changed her mind.

A bittersweet award

I wrote in my notes:

I will show plaque to [my daughter]. Families that deal with [HD] naturally and up front are the ones that have the best outcome in the long run. Denial necessary in life, but when carried to extremes, or used as the main way of dealing with life…. It becomes harmful/pernicious.

Nothing is ever simple with HD! This just can’t be a great award. [Instead] it’s got to be a reminder of my situation – and of our entire community’s situation.

Ends up being bittersweet.

If it were any other award, we’d be celebrating. No celebration. No mention. No discussion.

I hate denial!

‘Mental problems’

The HD community is filled with sad stories about denial among family members. People from HD families viscerally bond regarding the feelings of frustration, hurt, and anger over relatives’ denial.

My mother’s brother and his wife hid Huntington’s from their two children and their spouses. They explained away my mother’s behavior as “mental problems” (click here to read more). Only in the days before my mother died – six years ago this month – did my aunt tell my cousins the real cause. My cousins weren’t close to my family, but at the wake they were still so shocked by the news of HD that they cried much more than my sister, my father, and I.

Over the years I nudged my uncle, a successful small businessman and active in his community, to join the cause against HD. Many years ago, before my mother’s death, I wrote him a long and heartfelt letter outlining ways to help.

I never got a response.

To this day, I don’t know if he ever tested for HD. In his mid-70s, he has apparently showed no symptoms. Out of sight, out of mind, perhaps.

Jealousy over testing

For more than a decade, I have clashed with my sister and her family over their own denial, lack of involvement with my parents, and refusal to join the cause (click here to read more).

My sister, who to my knowledge remains untested, had her three sons before we learned of HD. Although we have never discussed it, she has undoubtedly agonized about whether she inherited the gene and, worst of all, passed it on.

She became extremely jealous of my wife and me for two big reasons: we had a daughter, and our child had tested negative.

Around that time, in 2001, my sister started to cut herself and her family off from me and my family.


I tried to keep in contact, but she showed little interest in learning more about HD. While I have long taken doctor-approved supplements and lived with the hope that treatments could save me from developing symptoms, from what I can tell, she has chosen not to learn about such potential solutions.

As my mother declined, although I lived thousands of miles away in California, I strived to find a good care regimen for her and to assist my father with suggestions and gentle exhortations. My sister, who lived only a couple miles away in Ohio, would visit my parents but took very little initiative to improve their situation.

She became angry and resentful about my offers of assistance and suggestions. I grew increasingly frustrated with the lack of communication with the family member geographically and personally closest to my parents.

In the midst of our family’s increasing difficulties with my mother’s condition, my sister told me on the phone, “You’re not really a brother.”

I was stunned, perplexed, and offended. I had traveled regularly to my hometown to visit not just my parents, but my sister, her husband, and my three nephews. My wife and I had also offered to fly out my oldest nephew to San Diego and take him to Disneyland, Sea World, the San Diego Zoo, and other California attractions, but my sister never responded.

Failed communication

In 2005, after several years without speaking, I insisted that we reestablish communication to help my father admit my mother to a nursing home. We became close again during the final months of our mother’s life and, when she died, my sister planned the wake and funeral so that my wife, daughter, and I could fly out in time.

However, as my father rapidly declined in the wake of my mother’s death, my sister and I again disagreed about a plan of care for him. When dialogue became impossible, I asked my father’s attorney to serve as an intermediary and to assist her with his affairs, including the transition to a memory care unit in an assisted living facility.

My father died in September 2009. I learned of his death in an e-mail from the lawyer after I participated in an intense, day-long HD observational study. However, my sister did not delay the funeral, making it practically impossible to get to Ohio on time. (Click here to read more.)

I was so distraught about the situation that I also concluded I might suffer a heart attack if I attempted to attend the funeral. I organized a private memorial service for my father at our San Diego home.

I have not spoken to my sister since August 2008. In 2010 we both attended a memorial luncheon for a deceased aunt, but we did not speak or even acknowledge each other’s presence. I was still livid about her lack of compassion in failing to delay my father’s funeral so that I might participate.

Keeping a distance

At this point, the anger and resentment are so deep that I believe my sister and I may never speak again.

While I have fought to combat HD, my sister has preferred to ignore it. That has compounded the kind of intense family disagreements that sometimes accompany inevitable life-and-death issues.

After so many failed attempts at establishing a relationship with my sister, I have concluded that, because of denial and other reasons, she and her family simply have no interest in me and my family. I concluded that it would be foolish to insist.

I am a firm believer in love as a solution to many of the world’s problems, including personal hatred and misunderstanding.

In my interpretation, love means keeping one’s distance from people who don’t want a relationship.

Advocacy in my home state

On May 14, I’m tentatively scheduled to speak on my experience with HD at an HDSA event in Northeast Ohio, where I grew up and where my parents are buried side by side.

Returning to my home state to speak out as an HDSA advocate will surely stir powerful and difficult emotions.

Many questions are running through my head. Should I invite my uncle and my sister – and their families – to attend? Would they even show up after so many years of conflict and denial? Would we talk and, if so, what would we say? Part of me doesn’t want them to attend, because I fear my anger at them might diminish the effectiveness of my activism.

Frankly, I don’t think they want to hear what I have to say, especially because I advocate activism. Years ago, my sister used to read at least some of my blog, but now I have no idea whether she follows it. I doubt my uncle even knows I have a blog. Should I continue to chalk them up as a lost cause? Or, in the name of the movement, should I make the extra effort to bring them into the cause?

As an advocate, I feel obliged to reach out. However, as a member of an HD family, I feel forlorn about the prospects for action by people such as my uncle and sister.

How to untie this knot?

I am reaping the fruits of my family’s long denial of HD.

The great irony is that my sister, my uncle, and their families probably don’t even know that I was named the HDSA Person of the Year.

The easy solution is to do nothing about the May event. Despite my award and my long years in the HD trenches, I feel powerless to change them.

My fellow HD activists, family members, and friends, what would you do?

How do we untie this terribly complex knot of denial?

I am in quandary about how to act – and to overcome this problem that threatens our march to treatments and a cure.

Continuing to speak out

Denial is like an added curse on HD families already so overwhelmed with the disease’s medical burdens.

My family’s story pales in comparison to other examples of denial and insensitivity.

As I reflect on these stories, I’m struck by the immensity of the stigma surrounding HD.

Perhaps I can take comfort in the fact that, no matter what my uncle or sister or anybody else thinks, I will speak out again about HD on May 14. In the final analysis, that is all I can do.

Someone will be listening, and that is good.

(Next: further reflections and concrete suggestions for overcoming denial.)