The San Diego Chapter
of the Huntington’s Disease Society of America (HDSA-San Diego) has taken its advocacy
to a new level with billboards announcing a chapter fundraiser, the Fifth
Annual Team Hope Walk on April 10.
At five high-traffic
locations in the San Diego area, the billboards went up on March 7 and will
remain up for 30 days, according to Misty Daniel, the HDSA-San Diego vice
president. Misty originated the billboard idea, the first time it’s been used
in the San Diego chapter, one of the most active in the country.
The billboard calls
on the public to “register today” for the Hope Walk at the website www.TeamHopeWalk.com.
The HDSA-San Diego 2016 Team Hope Walk billboard on Mission Gorge Road south of Twain Avenue in San Diego (photo by Gene Veritas, aka Kenneth P. Serbin)
“As a group, we’re
not very good advocates for ourselves,” Misty said of the HD community in a
phone interview. “This disease affects as many people as cystic fibrosis, but
you’ve heard of cystic fibrosis.”
Huntington’s disease
still lacks such instant public recognition, Misty observed.
“It’s not just that
it’s a rare disease, but it’s rarely known,” she explained. “I’m tired of
educating physicians and telling people that I have this in my family and them
not having a clue about what it is.”
Misty said she wants
the billboards to bring awareness of HD to the “point where I say, ‘I lost my
mom to Huntington’s disease,’ and they’ll say, ‘I know what that is. I’m
sorry.’ It’s getting harder and harder to use Woody Guthrie as my person to
reference. More and more people are saying: who is Woody Guthrie?”
Guthrie – one of the
greatest American folk singers of the 20th century and the composer of “This
Land is Your Land” – died of HD in 1967, at 55. That year his wife founded a network of HD support
groups and advocates that would become HDSA.
Billboards are a
traditional, “old media”
way of generating publicity. However, in this case they project a 21st-century imperative:
the need to cure neurological diseases. They reflect the ongoing high level of
creativity in a community facing one of the most devastating of those disorders
(click here to read more).
A passionate, resilient advocate
At 38, Misty is a passionate, resilient veteran of the HD cause.
She became an
advocate for HDSA-San Diego when she was just 19. She lost her mother Rosie
Shaw to the disease in 2007. Misty tested negative for HD two years later. A
brother with HD died in a motorcycle accident, losing control of the vehicle
perhaps because of the disease. Her sister Brooke, 46, has HD symptoms. Three
other siblings remain untested.
Misty speaks at HD
events such as the chapter’s second annual convention, held March 5. (I’ll have
more on this event in a future article.) She advocates for the passage of the
Huntington’s Disease Parity Act, a bill in Congress to update the Social
Security Administration’s long outdated definition of HD as a disease causing
only involuntary movements. That situation prevents people affected by
psychiatric and cognitive symptoms from qualifying for Social Security
disability payments. In addition, she assists drug makers involved in HD
clinical trials and other HD research.
Misty also helps
organize the local Hope Walks. About a year ago, she started thinking about the
possibility of billboards.
“HDSA does not spend
any money on advertising – not nationally or locally – because we want as much
of the dollars raised to go to HD care, advocacy and research as possible,”
HDSA CEO Louise Vetter said in an e-mail. “This is an important policy and
principle in how we steward the funds raised for our fight.”
So Misty and other advocates
raised the $2,000 needed to pay for the billboards. One of Misty’s untested
siblings donated $1,800. The Clear Channel media company, the owner of the
billboards, charged a nonprofit rate.
She pointed to key
participants in the effort: HDSA-San Diego board secretary Jamie Jirik; HDSA
staffer Stephanie Alband; former Clear Channel Radio employee Sherry Toennies;
and board member Paul June, whose branding firm designed the billboard.
“At the end of the
day, this is what HDSA-San Diego is all about: grass roots efforts,” Misty
said.
Misty Daniel at the 2014 San Diego Hope Walk (photo by Gene Veritas)
Catching families’ attention
“Huntington’s disease
has carried a stigma for so long,” Misty said of the need for the billboards.
“We continue to perpetuate the stigma generation after generation.”
The fear in HD
families is “overwhelming,” she continued. That fear “is not only palpable but
it is a real reason to control how we talk about” HD and share about it.
However, Misty has
sensed a change in the community.
“With the launch of
the Internet and social media, more and more people are confident about sharing
their stories and talking publicly about Huntington’s disease,” she said. “This
is what’s going to whittle away that stigma, more and more people talking about
it.”
Misty hopes that the
billboards will catch the attention of other HD-affected families in the San
Diego area who until now have had no contact with the chapter, events, and
support group.
According to Vetter,
advocates in the Upper Midwest used billboards in the early 2000s. In addition,
some national ad campaigns have run in magazines like TIME.
“Billboards are a
great way to raise visibility of the Team Hope program and HD to the broad San
Diego community,” she said. “They can spark curiosity to learn more about HD,
as well as fuel engagement to take part in the Walk.
“Additionally, these
billboards can validate the participation of those who are already part of our
fight to help HD families. When you see an ad or a billboard about something
you are involved in, it breeds pride and a deeper connection to the cause. For
the HDSA San Diego Chapter, this can mean new volunteer leaders and the ability
to have a greater impact.”
More than a logo
To stir broad interest, the billboards portray a family at
a previous Hope Walk in another city.
Unidentified, the
family has a sign with the words “I’m walking for: Ray Jacks – our brother.” (On
the billboard it’s not clear whether the surname is “Jacks” or “Jackson.”)
Another angle of the billboard (photo by Gene Veritas)
As of this writing, I
was unable to identity neither the family nor the person for whom they were
walking. Regardless, Misty stressed that including the photo was highly
important. (All HDSA walkers sign a waiver permitting use of their photos, she
noted.)
“We wanted to make
sure that the billboard had actual people on it, because this is a disease that
has been faceless for too long,” she said. “We felt that if it had only a logo,
we would be doing the Huntington’s disease community a disservice.
“No, this is not a
clipart. It’s a real family.”
Later Misty hopes to
reach out to the family.
“I want them to know
they’re on this billboard,” she continued. “This generation is walking on
behalf of those who can no longer walk for us.”
It strives for a
cure, she said, to prevent another generation from suffering from HD.
Please support my
family’s team, the "Serbin Family Team," in the 2016 HDSA-San Diego Hope Walk by clicking here to join us
and/or make an online donation.
Featuring music,
prizes, food, family fun, and more, the walk will take place at Coronado
Tidelands Park, 2000 Mullinex Drive, Coronado, CA, 92118. Walk registration
starts at 8 a.m. and the event at 9 a.m. Proceeds benefit HDSA.
A selfie of
Gene Veritas, aka Kenneth P. Serbin, at the billboard
