Feeling The Hope

(I dedicate this article to the dozens of people who joined or supported the “Serbin Family Team” on Apr xiv inwards the 2013 Team Hope Walk-San Diego of the Huntington’s Disease Society of America, HDSA.)

Lately, I’ve been feeling great hope – even equally my genetic clock ticks ominously – that researchers volition notice an effective handling for Huntington’s affliction too salvage me from next inwards the footsteps of my mother, who struggled against this so-called “devil of all diseases” for nearly xx years earlier succumbing at historic menstruum 68 inwards 2006.

Because the underlying causes of hard disk are untreatable, I’ve rarely permitted myself to pick out all-out promise during my fifteen years of advocacy too personal create out to avoid the inevitable symptoms. I’ve braced myself for the affect of onset, fifty-fifty equally I continue advocating for the drive on amount throttle until our community, together amongst the scientists working overtime for effective treatments, achieves victory.

Hope is a precious commodity to live savored when breakthroughs occur. I’ve saved a twain bottles of Hangtime Pinot Noir, the vino served at the Parker Palm Springs hotel inwards 2011 at a reception after my first major speech communication on HD, delivered at the Sixth Annual hard disk Therapeutics Conference, sponsored yesteryear the CHDI Foundation, Inc., in Feb 2011. I’m keeping at to the lowest degree i to celebrate on the solar daytime a handling is announced.

Big news, a sense of relief – tempered yesteryear reality

In recent weeks, the scientific discipline tidings too advocacy milestones pick out left me feeling especially buoyant.

On Apr 2, I was thrilled amongst President Barack Obama’s annunciation of the BRAIN (Brain Research through Advancing Innovative Neurotechnologies) initiative, which volition pass hundreds of millions of dollars over the adjacent decade to map the mysterious circuitry of the brain. Although hard disk researchers promise to notice treatments earlier the potential benefits of BRAIN move available inwards a decade or more, the annunciation of the projection lastly brings encephalon wellness too query to a long-overdue prominence inwards American politics.

The real adjacent day, HDSA held a symposium at the U.S. Senate to grade the 20^th anniversary of the regain of the hard disk gene. Dr. Francis Collins, the manager of the National Institutes of Health too i of the scientists who helped notice the gene, keynoted the meeting, which included presentations yesteryear telephone substitution hard disk researchers almost the prospects for treatments. As I watched the alive streaming video of the event, I could experience the sweep of history equally I reflected on the scientists’ words too my family’s odyssey amongst HD, starting fourth dimension amongst my mother’s genetic exam inwards 1995 too my ain exam inwards 1999.

Just a few days later, on Apr 8, the Swiss pharmaceutical giant Roche too Carlsbad, CA-based Isis Pharmaceuticals, Inc., announced a multi-million-dollar partnership to convey Isis’s potentially revolutionary hard disk gene-therapy drug into clinical trials, amongst a projected start appointment of the firstly one-half of 2014. I pick out followed the Isis projection closely since 2008, visiting the company’s labs, interviewing its scientists, writing detailed articles almost the research, and, inwards speeches to the hard disk community, citing the projection equally a bully sign of hope.

As I prepared an article on this latest phase of the project, I felt a profound sense of comfort too elation equally I pondered how the bargain amongst Roche should accelerate the research, increase the potential for effective results for symptomatic hard disk people, and, for the real firstly time, allow scientists to envision ways of preventing presymptomatic people similar me from always developing the disease!

I allow out a long sigh of relief – equally I produce i time again immediately inwards writing these words – too imagined a futurity without hard disk for me too the tens of thousands of families around the earth devastated yesteryear the disorder.

However, since too then I’ve tempered my enthusiasm amongst reality. Although scientists limited genuine optimism almost developing treatments, alone i inwards x clinical trials leads to a drug.

As I race against my genetic clock too yesteryear my mother’s historic menstruum of onset, a handling may non move far inwards fourth dimension to forestall my symptoms.

Nevertheless, the bully feeling of promise lingers too brightens my days!

Our generous supporters

In the midst of these events, my wife, my daughter, too I sought fundraisers too walkers for the Apr xiv Team Hope Walk.

In the wake of my definitive move out from the “HD closet” (in an article inwards The Chronicle of Higher Education and an interview on the website of my employer, the University of San Diego), nearly 70  friends, colleagues, too other supporters donated to a greater extent than than $16,000 to the “Serbin Family Team” – to a greater extent than than iii times our goal. (Overall, local HDSA board members expected the lawsuit to cyberspace to a greater extent than than $40,000 for the organization.)

Twelve volunteers joined us inwards the 5K walk at Tidewater Park inwards Coronado, CA, to assistance heighten awareness almost HD.

Members of "Serbin Family Team" at 2013 Hope Walk-San Diego (photo yesteryear Vince Margetta)

I felt enormous pride inwards my family, my friends too supporters, too the hard disk cause.

Love too humility

I was moved most yesteryear donations from individuals too families themselves hitting amongst serious illnesses, all of them amongst at to the lowest degree a partial genetic basis: pectus cancer, colon cancer, immature onslaught Parkinson’s disease, delicate X syndrome, too multiple sclerosis.

My solid unit of measurement too I learned of these other families’ struggles, including, inwards i case, a harrowing conclusion almost genetic testing.

I was deeply moved yesteryear this outflow of generosity too love.

For me, it was likewise a lesson inwards humility, a reminder that so many others endure from disease, an chance to move to a greater extent than sensitive to others’ needs, including the demand to back upward other causes.

Above all, the immense display of back upward for the “Serbin Family Team” stirred inwards me the same feeling of hope that I experienced inwards contemplating the Roche-Isis project.

Hope wins out

Sadly, merely ii days earlier the walk, I learned of the expiry of a swain hard disk back upward grouping member, a 20-year Navy veteran too airline airplane pilot whose career too life were cutting brusk yesteryear Huntington’s disease. He was merely 65.

“Damned affliction lastly won,” his mournful married adult woman wrote me inwards an e-mail.

As on countless occasions inwards my battle against HD, I had to overcome a sense of hopelessness, which threatened to overpower all of the adept feelings almost the query too the Hope Walk.

At the Hope event, I hugged our departed friend’s wife. Everybody held a 2nd of quiet for him.

Before setting out on the walk, I guided i of our squad members, a ninth-grader amongst a passion for scientific discipline too technology, over to the surface area where employees from walk co-sponsor Vertex Pharmaceuticals were congregating.

I introduced him to Paul Negulescu, the Vertex vice president of research, too mentioned that he aimed to move a researcher.

Paul invited him to see the Vertex facility and, inwards the future, mayhap contribute equally an intern.

“I desire to cure diseases,” the budding scientist told me during the walk.

Our drive had lost a warrior, but the Hope Walk had helped ready some other to produce battle.

(Below view other photos from the Hope Walk.)

"Serbin Family Team" members (left to right): friends Sofia, Jessica, Alejandro, too Victoria along amongst Ken Serbin, amongst San Diego skyline inwards background

"Serbin Family Team" members James Kohn (left), Ami Carpenter, too Ken Serbin at complete line

Vertex Vice President of Research Paul Negulescu (left), Ken Serbin, too Vertex Vice President, Biology, Beth Hoffman

"Team Vertex" too friends amongst San Diego-Coronado Bridge inwards background

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