Testimonials

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.

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.

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