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Why participating in clinical trials is important to Katie

Katie MoserParticipating in Huntington’s disease research is important to Katie Moser. Katie, 34, is gene positive and showing no symptoms of HD. She has a full-time job, friends, and a house, but she still chooses to take the time to participate in the trials and studies she can. She’s even driven five hours from her home in Elizabethtown, PA, to Rochester, NY, to participate.

“It’s important,” Katie said. “We need research in order to advance science. Ultimately, the goal is to find the cure or treatments or something to help in the long run. And if I weren’t going to do it, I can’t expect other people to do it. And it’s what I can do. I’m not a scientist; I’m not a doctor, but I can go do my part while I’m physically able to do it.”

Katie’s maternal grandfather died from complications of HD. She is an occupational therapist who chose to work with patients in an inpatient Huntington’s disease unit, where she saw the impact of the disease. Still, she chose to find out whether she carried the mutation, although most at-risk young people don’t. She raises money for research and participates in trials, helping to find treatments and, someday, a cure.

Katie’s advocacy and outgoing personality caught the attention of Lundbeck, a pharmaceutical company that specializes in finding therapies for central nervous system disorders. Katie is now a manager of Advocacy and Patient Support in Lundbeck’s Movement Disorder Marketing department. She travels the country, connecting with HD families at conferences, walks and other events. Her background in OT and her family experience helps her connect in a way no one else can.

Katie knows each individual’s situation is unique and doesn’t pressure anyone into participating, especially when trials need gene-positive participants. Not everyone wants to know their status.

“I tell people where to find information on trials. I direct people to the sites like HD Buzz to get information about research that will be easier for them to understand. And then I share my experience participating in trials,” Katie said.

Katie has participated in at least four multi-center trials and studies, as well as several smaller studies that only required one visit. She has traveled to New York City, Connecticut and Rochester to participate. She’s currently in ENROLL-HD, which is an observational study and one that doesn’t require participants to know their gene status.

“It’s a little exhausting,” Katie admitted. But even when one of the trials she participated in didn’t produce positive results (coenzyme Q10), at least it told researchers something.

“You don’t want to be wasting time and money. It’s important to find out what’s going on.”

To find out about HSG trials as soon as they launch, sign up for our future contact database. The Huntington’s Disease Society of America’s HD Trial Finder is a great resource for finding all currently enrolling HD trials, as well as clinicaltrials.gov.

To learn more about Katie’s experience learning her gene status, read the 2007 New York Times feature article, “The DNA Age: Facing Life with a Lethal Gene,” by Amy Harmon.

Continuing education opportunity in Tampa, FL

HSG 2015 AG StD_Page_1Every year, HSG moves its annual event to another part of the country, partly to make it accessible to a new group of HD families, but also to bring training to a new group of local clinical professionals. Clinicians specializing in neurology, movement disorders, mental health, genetics, and palliative care, as well as primary care providers, are likely at some time to see HD patients and families who need their guidance through the complex and progressive course of the disease, and not all of them have had the good fortune to have had specialized HD training.

Local practitioners can learn the ABCs of HD with our experts and gain the knowledge they need to care for this community at HSG 2015’s “Practical Pointers and Perspectives on Huntington Disease for Local Practitioners” from 8:30 a.m. to 5 p.m. Friday, Oct. 23, at the Grand Hyatt Tampa Bay, Tampa, FL. The program is being jointly provided by the Huntington Study Group and USF Health. Continuing Education credits will be offered ($100 registration fee covers credits).

Attendees will leave with:
• an up-to-date understanding of the diagnosis, staging, and typical symptoms of HD
• skills for expert approaches to treatment
• understand the role of allied health in the management of HD
• awareness of available medical, educational, and support resources

Register here!

More details can be found here.

Please pass this opportunity on to others so we can expand the number of practitioners who can provide high quality care to people with HD.

Life Interrupted

life interruptedThis year has brought several films and books about Huntington disease. Lisa Genova’s Inside the O’Briens, a novel about a family that discovers HD runs through it, published in April, and Lucy Walker’s The Lion’s Mouth Opens, a nonfiction short film following a young woman finding out whether she carries the gene that causes HD, aired on HBO in June, and WeHaveAFace.org launched its documentary project detailing the impact of HD, The Huntington Disease Project: Removing the Mask, in June, as well.

Now, our partners at Help4HD International, Inc., have published Life Interrupted, the stories of 12 people with HD and their caregivers. The stories detail the impact of living with HD on those with the disease and on everyone else around them.

Here is the book description:

Living the unimaginable, twelve Huntington’s disease patients and caregivers share true stories of struggle, devastation, and life-shattering events as they travel the journey that is HD. Along the way, you’ll meet ordinary people who develop extraordinary strength, courage, and perseverance as they try to counterbalance the chaos of lives falling apart as HD shows up like an out-of-control wrecking ball. One woman struggles for years to find her biological family, then discovers more than she expected. Agonizing parents watch helplessly as their children endure years of pain, lose every bit of their quality of life, and die far too soon, some from the juvenile form of HD. Couples fall in love, marry, and start their families just in time for this horrific disease to step in and rip everything away, eventually taking their soulmates’ lives and leaving them with the knowledge that their children, too, may face the same terrible fate. Witness the strength of these families as they rise to the challenge and advocate to be the last generation ever to live with the horrors of Huntington’s disease, a genetic neurodegenerative disease that has often been called the worst disease known to mankind.

To learn more about the book, click here.

Registration is open for HSG 2015: Building Our Future

HSG 2015 AG StD_Page_1Registration is now open for HSG 2015, Oct. 21-24, 2015 at the Grand Hyatt Tampa Bay in Tampa, FL. This has been an exciting year of change and accomplishments for HSG and we look forward to what is on the horizon. Join us in celebration and development of our exciting future at HSG 2015: Building Our Future!

Plans include:

  • Investigator and coordinator training sessions for ongoing HSG trials and Enroll-HD
  • Innovative and exciting educational sessions
  • Presentations on the latest and future therapeutics
  • A special reception including recognition of our membership’s amazing accomplishments
  • HD Clinical Research Symposium and HD Community Education Day on Saturday, Oct. 24

If you would like to submit an abstract for presentation at the Symposium, please see the Call for Abstracts. All selected abstracts will be published in the journal Neurotherapeutics and the presenting abstract author will be provided one night’s lodging at the Grand Hyatt.

Deadline for late-breaking Abstracts: Monday, Aug. 17, 2015

Please join us for this exciting event by registering by Oct. 1.

Get more information

Register Now!

CLOSED: Call for Abstracts: 9th Annual HD Clinical Research Symposium

CLOSED: Call for Abstracts

9th Annual HD Clinical Research Symposium: Saturday, October 24, 2015

Deadline for Receipt of Abstracts: July 13, 2015

Late Breaking Research Deadline: August 17, 2015

The Huntington Study Group (HSG) is organizing the Ninth Annual Huntington Disease Clinical Research Symposium (HDCRS) on Saturday, October 24, 2015 at the Grand Hyatt Tampa Bay in Tampa, Florida. In recognition of the focus on patient-oriented research, the HSG convened the first annual Clinical Research Symposium in 2007 to present valuable research and information to both clinicians and HD patients and family members.

Eligible abstracts may include data that have been presented previously, but please ensure they will still be of public, as well as scientific, interest. Authors will be asked to disclose relationships with funding sources and manufacturers of commercial products discussed in the presentation. The Symposium Committee will review and accept a limited number of abstracts for either platform or poster presentations. Accepted abstracts will be published in the journal Neurotherapeutics, and the primary presenting author will receive a night of lodging at the Grand Hyatt Tampa Bay. There is no registration fee to attend the HDCRS if attendees pre-register by October 16, 2015.

Deadline for receipt of abstracts is Monday, July 13, 2015 by 5:00PM, ET.

Late-Breaking Research Abstracts: Authors whose research data were not available until after the regular abstract deadline of July 13, 2015 are invited to submit a late-breaking abstract. Such late-breaking research submissions should represent original work not previously published.

Late-breaking research abstracts must be submitted by Monday, August 17, 2015 by 5:00PM, ET and should include an explanation of why this abstract was not submitted by the July 13th deadline.

Deadline for receipt of abstract is July, 13 2015 by 5pm, ET

 

Apply for a New Member Scholarship

HSG New Member Scholarship Award

The Huntington Study Group (HSG) wishes to encourage individuals wishing to pursue a career in HD research and expand its network of HD professionals. As such, the HSG has developed the New Member Scholarship program to support education and training for interested individuals.

New Member Scholarship Awards for new investigators, trainees, clinicians, geneticists, social workers, physical, speech, and occupational therapists, fellows, and medical students wishing to pursue a career in HD research and/or care to attend the HSG annual meeting: HSG 2015: Building Our Future, October 21-24, 2015 in Tampa, Florida. Scholarship recipients will learn about HD research and care, management and treatment of HD, and interact with the worldwide HSG network of researchers and clinicians.

This New Member Scholarship is open to first-time attendees of the HSG annual meeting. Applicants will be asked to submit a brief application cover letter outlining their interest in HD and becoming an HD professional and a CV/Biosketch. These applications will be reviewed by the HSG Scholarship Committee. The recipients will be expected to go through the approved HSG vendors in order to arrange travel and attendance at the meeting, and are also expected to attend the meeting.

Application DEADLINE: Monday, August 17, 2015

Applicants can submit their interest via our online application.

Recognition of the funders for this scholarship program will be appropriately recognized. Please contact Liz McCarthy if you wish to provide funding for this program.

New Member Scholarship Application DEADLINE: Monday, August 17, 2015

Apply to be a Shoulson Scholar

Shoulson Scholar Award

In honor of our founder, Dr. Ira Shoulson, the HSG has established the ‘Shoulson Scholar Fund.’ This fund will recognize outstanding junior investigators with a future of promising research in Huntington disease. The Shoulson Scholar Fund will be awarded to recipients in support of attendance of HSG 2015, the HSG’s annual meeting in Tampa, Florida, October 21-24, 2015. The award will support travel (airfare), 2 nights lodging, a travel stipend, and a $250 honorarium.

Application

Applicants will be asked to submit a CV or Biosketch, a letter of interest (under 150 words), and a scientific abstract for the HD Clinical Research Symposium. These applications will be reviewed by an HSG Committee. The recipients will be expected to go through the approved HSG vendors in order to arrange travel and attendance at the meeting, and are also expected to attend the meeting.

Application DEADLINE: Monday, August 17, 2015

Applicants can submit their interest via our online application.

Scholars will be recognized formally at the meeting via award and speaker presentations. Abstracts accepted for the Symposium will be published inNeurotherapeutics and scholars will be asked to present their abstract to the Symposium audience during poster sessions.* Recognition of the funders for this scholarship program will be appropriately recognized.

*Note that all submitted abstracts will be considered for these opportunities, regardless of Shoulson Scholarship reception. All primary authors on accepted abstracts for the Symposium will be provided one night’s lodging at the meeting hotel as well.

Shoulson Scholar Application DEADLINE: Monday, August 17, 2015

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