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Opportunity for fellowship in Regulatory Science

callforabstractsblogGeorgetown University’s Program for Regulatory Science & Medicine (PRSM) and the Pharmaceutical Research and Manufacturers of America (PhRMA) has announced an opportunity for a Fellowship in Regulatory Science, which provides fellows with one to two years of specialized training with access to expert faculty and scientists from Georgetown University, PhRMA, the pharmaceutical industry, and the U.S. Food and Drug Administration (FDA).

Fellows will be awarded up to two years of salary support and research stipends, beginning with a one-year term, with possibilities for renewal after successful completion of the first year. This postgraduate fellowship will help develop researchers and scholars to reach their fullest potential in advancing innovative research to benefit public health.

Interested? Don’t wait. The letter of intent is due Feb. 12.

  • February 12, 2016: Letters of intent due
  • February 29, 2016: Full applications due
  • April/May 2016: Candidate Interviews
  • July 1, 2016: Fellowship starts

Learn more here.

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.

 

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.

What HSG Means to Jenna

What does HSG mean to you?

Being a member of such a focused, bright, and motivated group,  is very inspiring and energizes me as we are all aiming to achieve great goals of finding better therapies for HD patients and families. I feel honored to be a part of the HSG and consider us all a big family!

What’s the most meaningful aspect of working with HD patients?

The most meaningful aspect of my job is the relationships I am able to develop with the patients and families. While HD can be challenging, I feel these patients and families really entrust a great deal of their personal lives with us as their providers, and I’m privileged to be involved in their care. I am also able to learn a tremendous amount by listening to both patients and families, and sometimes that is really what they want and need more than anything. As I reflect on my work with HD, one of my favorite quotes by William James comes to mind-“Act as if what you do makes a difference. It does.

Jenna Smith, RN, BSN

Research & Clinic Coordinator
UAB | The University of Alabama at Birmingham
Birmingham, AL

What HSG Means to Martha

What does HSG mean to you?

marthanance

The HSG, simply stated, represents the best hope for better treatments, hopefully disease-modifying treatments, for HD. The changes taking place within the HSG, broadening its membership base, will push this effort faster, by bringing in more people-power! I am hoping for more ideas, more connections, more rapid communication, novel approaches, and a more rapid pace of discovery!

What’s the most meaningful aspect of working with HD patients?

If you connect properly with a patient and family, if you give them a solid piece of ground to stand on–they know what HD is and does and what to expect, and you manage their symptoms as well as you can, and if they know that you will be there for them throughout the course of their disease–if you do those things, then the patients and their families will use their own energy and skills and creativity to live their lives to the fullest, and maybe even to pull other less fortunate patients along with them. I have been privileged to know some remarkable people over my years working in HD.

Martha Nance, MD

Director, Huntington Disease Clinic
Hennepin County Medical Center
Minneapolis, MN

What HSG Means to Julie

What does HSG mean to you?

stout​HSG means we can amplify our individual efforts by working together to be I strategic, to progress HD clinical research as rapidly as possible, and to save time and money by sharing our expertise and ​insights about how to constantly improve practices that will help us find treatments for HD.

What’s the most meaningful aspect of working with HD patients?   

​For me the draw of HD is the family. I am endlessly compelled by the generosity with which families care for those family members who have HD, and the resilience many families show under such challenging circumstances.​

I am also encouraged by the positive attitude and grace that many people with HD show​ in the face of such significant personal health challenges.

Julie C. Stout, PhD

Professor, School of Psychological Sciences
Faculty of Medicine, Nursing and Health Sciences
Monash University, Clayton Campus

What HSG Means to Claudia

What does HSG mean to you?

testaWorking with top researchers on a common goal is exciting and rewarding. HSG means bringing accomplished research teams together into a smart, welcoming community – it’s motivating to be a part of that.

What’s the most meaningful aspect of working with HD patients?

The impact of HD on patients and families is clearly motivating to all who work in the field. I decided to take that question in a different direction. This is on our movement disorders center website: It didn’t take me long as a physician-scientist to realize that patients are my best teachers. I owe my entire approach to clinical care and clinical research to HD patients. From exploding my expectations on how people react to genetic information, to viewing clinical trials as collaborations between many stakeholders including patients, the things I’ve been privileged to learn from HD patients influence every day.

Claudia M Testa, MD, PhD

Associate Professor, VCU Department of Neurology
Huntington Disease Program Director, VCU Parkinson’s & Movement Disorders Center
Joan Massey Chair in Clinical Parkinson’s Disease

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