News

What is HSG?

For HD Awareness Month, the Huntington Study Group is launching an education campaign, aimed at helping health care providers who are less experienced with Huntington disease (HD) to learn more about how to care for their patients and families with HD. HSG wants to share insights of our experienced HSG members with less experienced providers to help them better understand issues faced by HD patients and families. So, HSG is launching a new education section of our website with tools to help new HD providers.

 

  • There, you will find:
    • Videos addressing common questions providers new to caring for families with HD may have
    • A page of useful resources for providers, including care guides, referral resources, and links to many advocacy organizations
    • Annual Event education: HSG 2015 educational and research presentations
    • The underlying message is that HD is a treatable disease
    • A video explaining what HSG is
Please share this new section of our website with the providers who call you for help and let us know if you have more ideas for resources we can add. If you are on social media, we encourage you to share all of this information with your networks to ensure the word gets out there. If you’re a hashtag user, we’ll be using both #hdisatreatabledisease and #letstalkabouthd (HDSA’s hashtag) throughout May, HD Awareness Month.

HSG adds board member Joni Steinman

Joni SteinmanAs our newest board member, Joni M. Steinman brings 35 years of health care management consulting experience to advancing the goals of the HSG. As the co-founder and managing principal of AUSMS Healthcare Consultants, Steinman served the U.S. health care industry, advising policy makers, administrators and practitioners on strategic, facility, organizational and business planning and development matters, including performance improvement initiatives for hospitals, surgery providers and practitioners, hospice and home care agencies, medical groups and governmental agencies, regarding the development of many facets of acute, sub-acute, ambulatory, home and long-term care.  In 2012, after completing several consulting engagements in Toronto, Canada, Steinman affiliated with Strategic Interests, LLC, a Rochester, NY-based firm dedicated to guiding health care organizations nationwide to grow through improved performance and the innovative use of information technology and business intelligence.

With educational achievements in both political and medical sociology (Brandeis University, cum laude) and social work administration (San Diego State University), Steinman has devoted her career, as AUSMS’ motto indicates, to guiding clients and colleagues alike ‘From Ideas to Results’ in health care and human services. And as the sister of a Nobel Laureate in Physiology and Medicine, Steinman grew up as a close and ever-fascinated observer to the critical impact that the pursuit of and commitment to scientific research can have on some of our most vexing medical challenges.

Steinman has always given back to her communities through voluntarism and philanthropy. Examples of her commitment including serving as President of, respectively, the Health Systems Agency of San Diego and Imperial Counties, the Jewish National Fund’s San Diego Region and San Diego Women in Health Administration.  Today, in addition to her new commitment to HSG, she is a member of the Rochester Women’s Giving Circle, a community of philanthropic women who combine their financial strength to support area women and girls on their journey to economic self-sufficiency.

 

Show off your credentials

HSG credentialed research site sealHSG is now offering credentialed sites the opportunity to display their ability to participate in clinical research by putting an electronic badge on their website. Northwestern University Parkinson’s Disease & Movement Disorders Center was the first to add the badge to their site. Check it out here.

The badge tells families, staff and applicants to your program that you have received all necessary training and are participating in clinical research for Huntington disease.

If you would like to put the badge on your website too, please contact Heather Hare, director of Communications & Outreach, at heather.hare@hsglimited.org or 585-242-0277.

SIGNAL completes enrollment in cohort A

vaccinex_logoVaccinex Inc. completed enrollment of cohort A in its SIGNAL Clinical Trial, a randomized Phase 2 study to assess the safety, tolerability, pharmacokinetics, and efficacy of VX15/2503 in subjects at risk for or with early signs of Huntington’s Disease. Read the press release.

FDA wants to hear from you!

FDAThere’s still time and opportunity to tell the FDA your thoughts on drug development for Huntington disease!

The FDA focused on hearing from individuals with HD, family members and caregivers at its Sept. 22 Patient Focused Drug Development hearing. But from now until Nov. 23, the FDA is taking input from the entire HD community, including care providers and researchers. Specifically the FDA wants to know: At all stages of HD/JHD, if a treatment could be developed, what symptom would you most like to stop or what ability would you like to regain – what is most important to you?

The other topics about which the FDA is gathering input include the symptoms that affect daily life, how the disease affects social interactions and relationships, and how treatments have changed over time. To see the full list of topics, click here.

This is your chance to advocate on behalf of HD families and underscore with our country’s drug development process how imperative it is to address the many symptoms of HD. Please take advantage of this opportunity.

To submit your comments, click here and then click on the green “Submit a Formal Comment” button on the right side of the screen.

 

Regional Health Care Practitioners Invited to Learn More about Huntington Disease Oct. 23

Day-long course offering continuing education credits through USF

The Huntington Study Group (HSG), in support of the goal to make care for Huntington disease (HD) patients more available, is holding a day-long education opportunity for health care providers in Tampa on Friday, Oct. 23. “Practical Pointers and Perspectives on Huntington Disease for Local Practitioners” is part of HSG’s annual research and educational event, which, this year, is called HSG 2015: Building Our Future.

HD is uncommon, but not all that rare. Clinicians, nurses, social workers, etc., specializing in neurology, movement disorders, mental health, genetics and palliative care, as well as primary care providers, are likely to see HD patients and families who need their guidance through the complex and progressive course of the disease. This course seeks to empower providers with the knowledge and resources they need to care for HD patients.

The course, provided jointly by USF Health and HSG, is designed for health care providers in neurology and general clinicians, which has been approved for continuing education credits. The fee is $100 per registrant and includes CE 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 the available medical, education and support resources

Register here!

More details can be found here.

For more information:

Heather Hare

(585) 242-0277

Heather.Hare@hsglimited.org

 

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!

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