Huntington's Disease Society of America Center of Excellence

  • Nopoulos working on computer with assistantbrainPaulsen working with a patient

News and Events

UI senior finds her courage being face-to-face with Huntington disease

 UI HDSA COE Student Editorial Assistant Emmy Szymanski plants blue flags on the lawn of the University of Iowa Pentacrest for an HD Awareness Month display.Editor’s note: On her last day working at t...

Miller departing as UI HDSA COE social worker

Amanda Miller is departing for a new challenge as program director for a forthcoming UI mood disorders clinic

Law enforcement trainings to lay groundwork for proper treatment of people with HD, other diseases

UI HDSA COE Social Worker Amanda Miller presents general information and details on how to identify HD symptoms to law enforcement and first responders in Altoona.

HD Awareness Month recognized with several campus events

The UI HDSA COE is recognizing HD Awareness Month in May.

Hayes empowered by research participants, colleagues to do things bigger than himself

Hayes, a research assistant at the UI HDSA COE since August, says he wants to do whatever he can within the research world and as an advocate to help those in the HD community. (photo by Owen Wade)

No chance “Rules for 50/50 Chances” would have been about anything other than HD, McGovern says

A writing instructor and mentor once told author Kate McGovern to “write about the things you obsess over.” So when it came time to start typing the nascent letters on the keyboard that would form the...

A Q&A with self-described "New Girl" and new research assistant Emily Shaw

Emily Shaw joined us as a new research assistant this fall. Find out more about her with this Q&A.Click here to read a profile article about Shaw.

Risk of Huntington disease compounds teenage uncertainty in “Rules for 50/50 Chances”

The following is a book review of the novel "Rules for 50/50 Chances" by Kate McGovern, released Nov. 24, 2015.

Testing for HD means gaining control of her future for at-risk UI HDSA COE student employee

UI senior Emily Szymanski wants to be a champion for HD families and help find a cure for HD through her work at the UI HDSA COE (photo by Owen Wade). 

Life after college for Shaw means helping people every day as research assistant

A 2015 graduate of the University of Iowa, Emily Shaw is settling in to her role both as a research assistant and within the HD community. (photo by Owen Wade) 

Family planning options for HD-free kids: Adoption and donors

By Shawna Feely, MS, CGCUI HDSA COE Genetic Counselor, andCarly Siskind, MS, LCGCStanford School of Medicine, Neuromuscular Disorders Program

Family planning options for HD-free kids: Prenatal and preconception options

By Shawna Feely, MS, CGCUI HDSA COE Genetic Counselor, andCarly Siskind, MS, LCGCStanford School of Medicine, Neuromuscular Disorders Program

Shedding light on the darkness of her genetic fate

Jamie Parish uses a positive, proactive approach to living gene positive for Huntington disease (photo by Owen Wade)   By Christina Colletta

"The Lion's Mouth Opens" at UI screening to over 400 attendees

A full house saw the UI HDSA COE's Jan. 29 screening of "The Lion's Mouth Opens" in the Pappajohn Business Building on the UI campus. 

Free Jan. 29 “The Lion’s Mouth Opens” Huntington disease documentary screening

 

Palka seeks Huntington disease fate with courage, strength in permeating “The Lion’s Mouth Opens”

In “Twitch,” Powers explores genetic testing and learning her Huntington disease fate

From Iowa to Washington D.C., advocating on behalf of those affected by Huntington disease

On July 15 and Sept. 22-23, 2014, members of the Huntington’s Disease Society of America National Youth Alliance headed to Capitol Hill to urge their members of congress to co-sponsor the Huntington’s...

Free Oct. 2 “Twitch” Huntington disease documentary screening and lecture

What: Screening of “Twitch” documentary Date: Oct. 2 (Thursday), doors open at 6:30 p.m. screening begins at 7 p.m. (film run time 45 minutes) Location: Seamans Center (map), Room 1505 (first floor au...

Huntington disease fundraising efforts are off and running with Team Run for HD

By Christina Colletta

Summer intern looking forward to engaging, furthering HD cause through communications

By Christina Colletta

Free “Alive and Well” Huntington disease documentary screening May 14

As part of our May 2014 Huntington’s Disease Awareness Month activities, please come join us for a FREE screening of the documentary Alive & Well at the Iowa Memorial Union’s Iowa Theater (former Bijo...

HD Support Group offers more than meets the eye

By Amanda Miller UI HDSA COE Social Worker

Luther recognized as one of UI’s Student Employees of the Year

The UI Huntington’s Disease Society of America Center of Excellence’s Jolene Luther, a senior from Belgium, Wis., has been named a 2014 Student Employee of the Year Certificate of Appreciation winner,...

A night of hockey for HD: Fundraiser set for Iowa Wild game 

Amid slap shots and faceoffs, you can help the HDSA Iowa Chapter raise funds and awareness for HD by attending the Iowa Wild hockey game Friday, Jan. 31 in Des Moines.

 From behind the scenes to by participants’ side

By Sean Thompson UI Huntington's Disease Society of America Center of Excellence Public Relations Coordinator

Happy to make a difference

Bella De Soriano is our newest research associate, on the job since September. Find out more about her with this Q&A, and click here to read a profile article about De Soriano.

 Fellowship provides immersion in HD research

By Jolene Luther Huntington's Disease Society of America Donald A. King Summer Research Fellow

Always looking out for her research participants: In her work and upon her retirement, Pat Ryan kept participants as top priority

By Jolene LutherUI HDSA COE Public Relations Assistant

Help UI HDSA COE raise money for HD patient care through shopping

By Jolene Luther

In her own words: Ryan bids farewell

University of Iowa Huntington’s Disease Society of America Center of Excellence Research Associate and PREDICT-HD Coordinator Pat Ryan retired in August after over five years working here. In her own ...

Summer Intern Connects with HD Community, Becomes Dedicated HD Advocate

By Sarah Petitt

Driven from Her Heart to Research Fellowship: A special bond with her grandfather leads UI student to conduct Huntington disease research

Story by Sean ThompsonPhotos by Owen Wade

Through Social Work, Miller Aims to Help Those in Need

The following is an extended version of an article appearing in the Spring 2013 issue of HIND-Sight.

May is Huntington's Disease Awareness Month

May is Huntington's Disease (HD) Awareness Month, and The University of Iowa Huntington's Disease Society of America (HDSA) Center of Excellence is working to raise awareness of this devastating neuro...

Hoop-A-Thon to Benefit Huntington Disease on April 6

The University of Iowa Huntington’s Disease Society of America Center of Excellence is helping to organize the 2013 Huntington’s Disease Society of America Cedar Rapids Hoop-A-Thon fundraising event, ...

Paulsen Named Roy J. Carver Chair in Neuroscience

Jane Paulsen, PhD, professor of psychiatry, neurology, psychology and neurosciences, has been named the Roy J. Carver Chair in Neuroscience.

Pennsylvania Girl Raises Money for a Rare Juvenile Disease

Nine-year-old Virginia Buck does not ask for much for herself. In fact, the only thing she really asks is that you try and understand what she and other kids like her are going through. Virginia is li...

Paulsen Honored for Work on Juvenile Huntington Disease

Jane Paulsen, PhD, co-director of the Huntington’s Disease Society of America Center of Excellence at the University of Iowa, has been named winner of the 2012 Juvenile Huntington’s Disease Award from...

May is Huntington Disease Awareness Month

May is Huntington’s Disease (HD) Awareness Month, and The University of Iowa Huntington’s Disease Society of America (HDSA) Center of Excellence is working to raise awareness of this devastating neuro...

2012 Huntington’s Disease Society of America Hoop-A-Thon

The University of Iowa Huntington’s Disease Society of America Center of Excellence is once again supporting the 2012 Huntington’s Disease Society of America Hoop-A-Thon in Iowa City, which is part of...

Leserman Leaves Having Learned Much from Huntington Disease Families

After nine years as the University of Iowa Huntington's Disease Center of Excellence coordinator and social worker, Anne Leserman is moving to New Jersey, where her husband recently started a new job....

In Their Own Words: Responding to Leserman’s Departure

With Anne Leserman’s nine-year tenure coming to an end, HIND-Sight asked Huntington disease family members, colleagues, and others for their thoughts on Leserman’s time at the University of Iowa Hunti...

Leserman Honored by National Society for Outstanding Family Services

Anne Leserman, social worker and coordinator for the University of Iowa Huntington’s Disease Society of America Center of Excellence, has been named winner of the 2011 Huntington’s Disease Society of ...

Protection for Huntington Disease Families Against Health Insurance Discrimination

Legislative action taken in Iowa this year prohibits insurance companies from discriminating against persons with Huntington disease based on genetic testing results.

Gonzalez a Fixture at the Huntington Disease Clinic at the University of Iowa

Patients that come to the University of Iowa Huntington’s Disease Society of America Center of Excellence’s clinic are getting used to seeing another familiar face as part of the clinic staff.

As Rules Continue to Be Finalized, What Is to Be Made of GINA?

Specifics of a federal law are still being finalized that would protect people from having genetic information used against them by health insurance companies and in the workplace.