Billboards: An Erstwhile – Only Likewise Novel – Mode Of Projecting The Huntington’S Illness Cause

The San Diego Chapter of the Huntington’s Disease Society of America (HDSA-San Diego) has taken its advocacy to a novel degree amongst billboards announcing a chapter fundraiser, the Fifth Annual Team Hope Walk on Apr 10.

At 5 high-traffic locations inward the San Diego area, the billboards went upwards on March vii together with volition stay upwards for thirty days, according to Misty Daniel, the HDSA-San Diego vice president. Misty originated the billboard idea, the get-go fourth dimension it’s been used inward the San Diego chapter, ane of the most active inward the country.

The billboard calls on Earth 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 southward of Twain Avenue inward San Diego (photo yesteryear Gene Veritas, aka Kenneth P. Serbin)

“As a group, we’re non real proficient advocates for ourselves,” Misty said of the hard disk community inward a telephone interview. “This illness affects equally many people equally cystic fibrosis, but you’ve heard of cystic fibrosis.”

Huntington’s illness nevertheless lacks such instant world recognition, Misty observed.

“It’s non simply that it’s a rare disease, but it’s rarely known,” she explained. “I’m tired of educating physicians together with telling people that I receive got this inward my identify unit of measurement together with them non having a clue almost what it is.”

Misty said she wants the billboards to select awareness of hard disk to the “point where I say, ‘I lost my mom to Huntington’s disease,’ together with they’ll say, ‘I know what that is. I’m sorry.’ It’s getting harder together with harder to usage Woody Guthrie equally my soul to reference. More together with to a greater extent than people are saying: who is Woody Guthrie?”

Guthrie – ane of the greatest American folk singers of the 20th century together with the composer of “This Land is Your Land” – died of hard disk inward 1967, at 55. That yr his married adult woman founded a network of hard disk back upwards groups together with advocates that would move HDSA.

Billboards are a traditional, “old media” agency of generating publicity. However, inward this illustration they projection a 21st-century imperative: the require to cure neurological diseases. They reverberate the ongoing high degree of inventiveness inward a community facing ane 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 hard disk cause.

She became an advocate for HDSA-San Diego when she was simply 19. She lost her woman parent Rosie Shaw to the illness inward 2007. Misty tested negative for hard disk ii years later. Influenza A virus subtype H5N1 blood brother amongst hard disk died inward a motorbike accident, losing command of the vehicle peradventure because of the disease. Her sis Brooke, 46, has hard disk symptoms. Three other siblings stay untested.

Misty speaks at hard disk events such equally the chapter’s mo annual convention, held March 5. (I’ll receive got to a greater extent than on this number inward a hereafter article.) She advocates for the passage of the Huntington’s Disease Parity Act, a mouth inward Congress to update the Social Security Administration’s long outdated definition of hard disk equally a illness causing solely involuntary movements. That province of affairs prevents people affected yesteryear psychiatric together with cognitive symptoms from qualifying for Social Security disability payments. In addition, she assists drug makers involved inward hard disk clinical trials together with other hard disk research.

Misty also helps organize the local Hope Walks. About a yr ago, she started thinking almost the possibility of billboards.

“HDSA does non pass whatsoever coin on advertising – non nationally or locally – because nosotros desire equally much of the dollars raised to move to hard disk care, advocacy together with question equally possible,” HDSA CEO Louise Vetter said inward an e-mail. “This is an of import policy together with regulation inward how nosotros steward the funds raised for our fight.”

So Misty together with 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 possessor of the billboards, charged a nonprofit rate.

She pointed to fundamental participants inward the effort: HDSA-San Diego board secretarial assistant Jamie Jirik; HDSA staffer Stephanie Alband; old Clear Channel Radio employee Sherry Toennies; together with board fellow member Paul June, whose branding firm designed the billboard.

“At the halt 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 yesteryear Gene Veritas)

Catching families’ attention

“Huntington’s illness has carried a stigma for together with hence long,” Misty said of the require for the billboards. “We move on to perpetuate the stigma generation after generation.”

The fright inward hard disk families is “overwhelming,” she continued. That fright “is non solely palpable but it is a existent argue to command how nosotros verbalize about” hard disk together with portion almost it.

However, Misty has sensed a alter inward the community.

“With the launch of the Internet together with social media, to a greater extent than together with to a greater extent than people are confident almost sharing their stories together with talking publicly almost Huntington’s disease,” she said. “This is what’s going to whittle away that stigma, to a greater extent than together with to a greater extent than people talking almost it.”

Misty hopes that the billboards volition grab the attending of other HD-affected families inward the San Diego expanse who until forthwith receive got had no contact amongst the chapter, events, together with back upwards group.

According to Vetter, advocates inward the Upper Midwest used billboards inward the early on 2000s. In addition, some national advertising campaigns receive got run inward magazines similar TIME.

“Billboards are a cracking agency to enhance visibility of the Team Hope programme together with hard disk to the wide San Diego community,” she said. “They tin spark curiosity to larn to a greater extent than almost HD, equally good equally fuel engagement to accept purpose inward the Walk.

“Additionally, these billboards tin validate the participation of those who are already purpose of our care to aid hard disk families. When you lot run into an advertising or a billboard almost something you lot are involved in, it breeds pride together with a deeper connective to the cause. For the HDSA San Diego Chapter, this tin hateful novel volunteer leaders together with the mightiness to receive got a greater impact.”

More than a logo

To stir wide interest, the billboards portray a identify unit of measurement at a previous Hope Walk inward some other city.

Unidentified, the identify unit of measurement has a sign amongst the words “I’m walking for: Ray Jacks – our brother.” (On the billboard it’s non clear whether the surname is “Jacks” or “Jackson.”)

Another angle of the billboard (photo yesteryear Gene Veritas)

As of this writing, I was unable to identity neither the identify unit of measurement nor the soul for whom they were walking. Regardless, Misty stressed that including the photograph was highly important. (All HDSA walkers sign a waiver permitting usage of their photos, she noted.)

“We wanted to construct certain that the billboard had actual people on it, because this is a illness that has been faceless for equally good long,” she said. “We felt that if it had solely a logo, nosotros would hold out doing the Huntington’s illness community a disservice.

“No, this is non a clipart. It’s a existent family.”

Later Misty hopes to attain out to the family.

“I desire them to know they’re on this billboard,” she continued. “This generation is walking on behalf of those who tin no longer walk for us.”

It strives for a cure, she said, to forestall some other generation from suffering from HD.

Please back upwards my family’s team, the "Serbin Family Team," inward the 2016 HDSA-San Diego Hope Walk by clicking here to bring together us and/or construct an online donation.

Featuring music, prizes, food, identify unit of measurement fun, together with more, the walk volition accept identify at Coronado Tidelands Park, 2000 Mullinex Drive, Coronado, CA, 92118. Walk registration starts at 8 a.m. together with the number at nine a.m. Proceeds exercise goodness HDSA.

A selfie of Gene Veritas, aka Kenneth P. Serbin, at the billboard

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