Support From Unaffected Relatives Makes Big Departure Inward Instruct By Against Huntington’S Disease

May is Huntington’s Disease Awareness Month.

Building awareness inwards the struggle to defeat hard disk drive agency expanding cognition of this deadly encephalon disorder beyond straight affected individuals together with their families. Ultimately, an effective motility must actively withdraw the unaffected, both relatives together with friends.

George Essig epitomizes the dedication of the unaffected relative.

For families similar mine – my woman parent died of hard disk drive inwards 2006, together with I acquit the genetic mutation – individuals similar George pick out promise alive.

“I hollo back equally a kid my uncle walking inwards a rattling clumsy way together with at i menage unit of measurement lawsuit fifty-fifty spilling his entire plate of nutrient on the living room floor,” George says inwards the May fifteen edition of “Faces of HD,” a daily autobiographical advocacy mini-profile disseminated via email together with social media yesteryear the Huntington’s Disease Society of America (HDSA) during May. “People sort of looked away. My aunt cleaned things upwards amidst the awkwardness. My uncle got progressively worse together with could non enunciate his words.

"I hollo back that the menage unit of measurement sentiment his son, my cousin, equally a immature man child was mirroring his father's actions. We works life out of course of instruction that he had kid onslaught Huntington's disease. He died at historic menses 19."

George Essig

Nobody inwards George’s extended Midwestern menage unit of measurement wanted to speak close HD, he remembers.

“My parents would non speak close it,” he continues. “I learned my granddaddy had it. My uncle tried to commit suicide inwards the basement of his domicile using gasoline from the lawnmower. My cousins' boyfriends at the fourth dimension had to construct clean it up.”

In 1975, George moved to San Diego.

“Huntington’s was lost inwards my memory,” he says. “I am i of 8 kids. It wasn't until my Dad was inwards his seventies that nosotros figured he did non inherit the defective hard disk drive gene.”

About twelve years ago, George together with a sister, Kathleen Martinek of North Carolina, started wondering what had happened to the branch of the menage unit of measurement affected yesteryear HD. As they got dorsum inwards touch, they learned of the terrible destruction wrought yesteryear the disease.

Eventually they would discovery that hard disk drive had stricken non exclusively his granddaddy together with uncle, but some other uncle, an aunt, 3 cousins, together with a disclose of minute together with 3rd cousins.

The affliction likewise caused collateral damage, devastating those who lived at endangerment but did non prepare symptoms.

“I works life out lately from (a cousin), directly 69, who nosotros had lost rails of, that she experienced the deterioration of her entire menage unit of measurement together with her ain mental health,” George says. “She doesn’t desire to speak close Huntington’s disease. She together with her hubby adopted children.”

George assumes the cousin had preferred to adopt rather than run the endangerment of passing on the mutation to biological children. Each kid of an HD-affected parent has a 50-50 adventure of inheriting the mutation.

To larn to a greater extent than close hard disk drive together with the endeavor to halt it, George contacted members of HDSA-San Diego. In 2006, he joined the chapter board of directors. (I served on the board from 1998-2010.)

“I would similar to assist heighten coin for a cure together with educate people close Huntington’s – starting amongst my ain menage unit of measurement together with friends,” George said inwards an article close him that I wrote for the HDSA-San Diego newsletter.

I noted that George together with his married adult woman Theresa lived inwards Poway, CA. The span has 3 grown daughters, who operate inwards medicine, law, together with education. George's hobbies include growing avocados, together with he enjoys swimming together with bicycling.

For close a year, George quietly observed the other board members at work. At the time, he told me he was searching for an effective niche on the board.

George Essig studies documents at the May 2007 coming together of the HDSA-San Diego board of directors (photo yesteryear Gene Veritas).

George had an infectious smile, but he was likewise rattling earnest together with persistent inwards his efforts to brand a departure for the cause.

A tv set together with radio marketing specialist, George started to parlay his contacts inwards the local business, media, together with pro sports communities into back upwards for HDSA. He likewise generated ideas for fundraisers together with advocacy efforts.

In 2012, George became the HDSA-San Diego board president. Since then, he has devoted most of his operate days to leading the chapter’s continuing efforts to heighten awareness together with obtain funds for query towards treatments together with a cure.

That year, he presided over the chapter’s 12th annual gala, which raised a San Diego chapter gala record $155,000 for HDSA.

“Volunteering works both ways equally I pick out learned that I acquire a dandy bargain inwards provide together with dream of the day, which nosotros are all encouraged about, that a handling for hard disk drive volition move discovered,” George says inwards his HDSA profile. “And of course, that twenty-four hours can’t come upwards before long enough.”

After reading his profile, I e-mailed George: “Thank y'all for sharing your family's powerful together with haunting story – and your message of hope. If to a greater extent than unaffected relatives of the affected helped out, equally y'all do, we'd move much farther along inwards this fight.”

Learn to a greater extent than close George together with his advocacy inwards the photos below. To donate to HDSA, please click here.

George together with Theresa Essig (right) amongst San Diego Chargers quarterback Philip Rivers (in blueish tie) together with Essig daughters together with sons-in-law at 2009 HDSA-San Diego Celebration of Hope Gala (photo yesteryear Mike Nowak). The San Diego chapter's signature event, the Hope Galas pick out brought inwards over $1 i M 1000 for aid together with cure of hard disk drive since 2001. 

George speaks at the Apr 2011 coming together of the San Diego hard disk drive back upwards group (photo yesteryear Gene Veritas). Each yr the chapter board meets i time amongst back upwards grouping members to hash out chapter activities.

George amongst fille Julie together with married adult woman Theresa at Dec 2013 screening of the hard disk drive documentary Alive together with Well (photo yesteryear Gene Veritas)

George addresses the crowd but earlier the showtime of the 2014 HDSA-San Diego Hope Walk on Apr thirteen (photo yesteryear Gene Veritas). The lawsuit garnered to a greater extent than than $40,000 for hard disk drive aid together with cure.

Share this post