Reaching Out To The ‘Hd Family’ At The Globe Congress On Huntington’S Disease

As I returned on the bird from Brazil as well as the 6th World Congress on Huntington’s Disease, held September 15-18 inwards Rio de Janeiro, I was thrilled nearly my fortified connections to the emerging global motion to defeat HD.

I greatly expanded my contacts within the Brazilian hard disk drive community, which had the largest representation of hard disk drive household unit of measurement members, alongside to a greater extent than than lx attendees.

After months of frequent contact via e-mail, phone, as well as Skype, I was delighted to run into inwards individual Taíse Cadore, the president of the Associação Brasil Huntington (ABH), as well as neurologist Francisco Cardoso, M.D., Ph.D., 2 fundamental organizers of the event. Along alongside physician Mônica Santoro Haddad, Cadore, Cardoso, as well as I own got worked to heighten the profile of hard disk drive inwards Brazil as well as to involve the authorities inwards improving the aid provided to patients.

ABH volunteers helped pose on the congress, staffed an data table, as well as attended many of the scientific as well as HD-family-oriented activities. Along alongside the organizing commission as well as many other Brazilians contributing to the event, the ABH volunteers made the congress a success.

In the coming days, I volition gear upwards a comprehensive written report on the congress, including a video of my presentation on coping strategies for living alongside the hard disk drive gene, addition many of the other presentations.

Taíse Cadore (photo yesteryear Gene Veritas)

Gene Veritas alongside (from left to right) ABH volunteers Carmen Faccio, Maria Eni Souza, Carmen Varalta, Majida, as well as Tereza Portigliotti as well as Zulay Final Romero of the Venezuelan hard disk drive association. The t-shirts say "embrace this cause." 

Cramming inwards activities

For now, I am focusing on the transition from the cultural surroundings of Brazil – my “other home” – dorsum to my life inwards San Diego.

International journeys require intense, detailed preparation. This 1 proved specially demanding.

After a 25-year stretch inwards which I visited Brazil annually, including long periods living there, I declined to move at that topographic point inwards 2011 as well as 2012. Those years my fourth dimension was taken upwards yesteryear my increasingly populace hard disk drive advocacy as well as my added focus on the history of science, technology, as well as medicine inwards the context of the Huntington’s movement. The trip felt similar a whirlwind: it included the congress, iv presentations, other Brazil-related research, as well as visits alongside relatives as well as friends crammed into but x days.

It didn’t aid matters that my connexion to Rio was delayed around thirteen hours, obliging me to pass the early on morn of September thirteen sleeping on a cot inwards the Dallas-Fort Worth airport. The trip to Rio injure upwards taking thirty hours!

A life-affirming quest

This was non but around other of my expeditions to Brazil.

Once again, I was on a mission to aid defeat Huntington’s disease, the status that, unless a handling comes soon, volition relentlessly assail my brain. In improver to helping alongside advocacy inwards Brazil as well as planning a fleck of the congress, I spent to a greater extent than than thirty hours preparing the speeches I would deliver inwards Brazil.

The 24-hour interval earlier I left the U.S., I gave a 90-minute Skype interview to journalist Marcelo Leite, who published an article inwards the Folha de S. Paulo titled “‘It’s necessary to overstep laws against genetic discrimination,’ says historian.”

The ABH circulated copies of the article at the congress. H5N1 radio reporter who had seen the article interviewed me as well as others. Senator Aloysio Nunes Ferreira, 1 of iii senators representing the solid reason of São Paulo, Brazil’s most populous as well as economically powerful state, wrote me a personal email pledging to force for passage of such legislation inwards Brazil’s Congresso Nacional.

I felt a deeply visceral satisfaction coming together alongside as well as then many of the hard disk drive movement’s advocates. It was emotionally wrenching to catch people alongside hard disk drive as well as take away heed the affected, cistron carriers, at-risk, as well as caregivers tell their stories.

Hugging my boyfriend “HD family” members from far-off lands or shaking their hands joined us inwards a lifelong, life-affirming quest.

Gene Veritas alongside actress as well as ABH volunteer Luiza Portigliotti 

Gene Veritas alongside Carlos as well as Eliezé Adriani of Campinas, Brazil

Stark challenges, seeking advice

One woman, a middle-aged dentist from Rio inwards the early on stages of hard disk drive but all the same completely lucid, wanted to know nearly supplements as well as other remedies that I take.

The woman raise of Priscila, a 31-year-old Rio adult woman alongside pronounced chorea, the involuntary, dance-like movements produced yesteryear HD, asked how she mightiness acquire her immature lady into a clinical lawsuit for the hard disk drive “vaccine” they heard was inwards evolution inwards California. The newspaper O Estado de S. Paulo featured Priscila as well as her household unit of measurement inwards an article nearly the basis congress as well as HD.

Priscila's mom was referring to the gene-silencing approach at Carlsbad-headquartered Isis Pharmaceuticals, Inc., which, along alongside pharmaceutical giant Roche, hopes to start Phase I of the lawsuit yesteryear the halt of 2014. I explained that Isis as well as Roche had non yet announced the lawsuit sites as well as suggested that she as well as her household unit of measurement should come about abreast of tidings on the project.

Others shared alongside me their stories of testing positive for the gene, the stark challenges of household unit of measurement planning, as well as learning that a potential hereafter mate is at risk.

Priscila, a 31-year erstwhile Rio resident who suffers from hard disk drive (photo courtesy of O Estado de S. Paulo)

Priscila on the beach inwards Rio (photo courtesy of O Estado de S. Paulo)

In sync alongside the movement

During this trip, I reached many milestones.

I felt fully inwards sync alongside the hard disk drive movement, its values, as well as its supporters, every bit I took thirteen congress participants as well as leading hard disk drive researchers to my favorite Rio steakhouse as well as bar; for the get-go fourth dimension met Nancy Wexler, the dean of hard disk drive scientists; as well as delivered my spoken communication on hard disk drive as well as bioethics as well as engaging alongside the emotion-charged audience at a college inwards São Paulo on September 21.

As waiter serves steak, Gene Veritas (right) converses alongside hard disk drive specialist physician Ed Wild, global hard disk drive advocate Charles Sabine, as well as hard disk drive drug-hunter physician Doug Macdonald at Café Lamas inwards Rio de Janeiro (photo yesteryear Alice Wexler).

I felt vindicated inwards my determination to become fully populace nearly hard disk drive slowly final twelvemonth as well as meld my professional person as well as personal lives alongside my advocacy.

I smiled as well as got a warm feeling within every bit I spoke of this large transition inwards my life alongside a long-time Brazilian friend as well as professional person colleague.

As she observed, I was doing the correct thing.

Gene Veritas (aka Kenneth P. Serbin) inwards Rio (photo yesteryear Tim Power)

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