Summer

UI Huntington’s Disease Society of
America Center of Excellence
HIND–Sight
Huntington Information & New Discoveries
To D.C. for
HD advocacy
Powers to
screen “Twitch”
at UI on Oct. 2
UI HDSA COE’s Jolene Luther
joins other youth on Capitol Hill
to advocate for the HD Parity Act
By Christina Colletta
UI HDSA COE Public Relations Assistant
After losing her grandfather to
Huntington disease in 2011, Jolene Luther
decided she would do everything in her
power to help those affected by HD. Now,
the 22-year-old Belgium, Wis. native is
commemorating her grandfather’s legacy
while living out her mission through her
career path, and, as of recently, advocacy.
Luther, a research assistant at the UI
HDSA COE, travelled to Washington
D.C. twice in three months with members
of the HDSA National Youth Alliance
(NYA) to advocate for the passing of H.R.
1015/S. 723, the Huntington’s Disease
Parity Act.
The journey that defined her purpose
After Luther’s grandfather was
diagnosed with HD, her mother and aunt
decided to be tested to see if they inherited
the HD gene. It came as a huge relief to
learn both tested negative.
“My family’s outcome was a very
fortunate one, so I very passionately want
to continue to fight back against HD for
all of the inspiring people that I have met
who didn’t have the same luck that I had,”
said Luther.
“HD is like a coin toss, and if my
mom’s coin toss had gone the other way, it
would be me in that situation right now—
with one parent suffering from HD and
the prospect of having to face it myself on
the horizon.”
Since Luther’s grandfather was in
his 60s when he started experiencing
symptoms, he qualified for Medicare. Her
family’s financial situation also allowed
Vol. 15, Issue 2
Summer 2014
UI HDSA COE Research Assistant Jolene
Luther advocates in Washington, D.C. for HD
families less fortunate than her own.
them to care for him from their home
with the assistance of a home health aide.
Luther realizes most families affected
by HD do not have these benefits, which
she says can have a profound negative
effect on the family structure.
“Often, cognitive and behavioral
symptoms early on in the disease will lead
families to bankruptcy, divorce, and other
devastating outcomes long before they are
ever qualified to receive Medicare because
of disability,” said Luther.
The Social Security Administration’s
outdated criteria (written nearly 30 years
ago) for considering whether or not an
individual with HD qualifies for Social
Security Disability benefits only takes
into account HD’s physical impairments,
ignoring the debilitating cognitive and
behavioral symptoms that can occur long
before the motor symptoms.
Because of these inaccurate guidelines,
individuals with HD who are not yet
displaying motor symptoms are routinely
denied or delayed receiving Social
Security Disability benefits, and even if
See ADVOCACY, p. 2
The nine-stop international screening
tour for the emotionally gripping “Twitch”
documentary film is coming to the
University of Iowa on Oct. 2 at 7 p.m.
The film’s creator “Twitch” screening
and star Kristen When: Oct. 2, 7 p.m.
Where: 1505 Seamans
Powers, a 2012
Center (first-floor
TEDxTeen
auditorium), University
speaker and
of Iowa campus
student at
Admission: Free
Stanford
Speaker: “Twitch”
University, will
creator and star
Kristen Powers will
be on campus
for the screening follow the film with a
to talk about the discussion/Q&A
issues surrounding More info: Visit the UI
HDSA COE website (see
genetic testing
p. 2 for web address)
and Huntington
disease, and answer questions about her
incredible journey.
See TWITCH, p. 2
Photo courtesy Kristen Powers
Kristen Powers created and stars in “Twitch,” a
documentary about facing her HD fate.
2 – HIND-Sight – Summer 2014
Photo courtesy UAB
Kristen Powers speaks at a “Twitch”
screening Sept. 10 at the University of
Alabama at Birmingham.
TWITCH continued from P. 1
“Twitch” follows Powers as she goes
through genetic testing for HD. The film
highlights the pressures people, especially
young adults, face when given the chance
to be handed their medical fate.
The film will chronicle the emotional,
political, economic, social and medical
journey through this important test, as
well as the impact on the individual’s
future and day-to-day life after receiving
the test results. Powers hopes that the
ADVOCACY continued from P. 1
an individual is deemed eligible, there
is a two year waiting period to receive
Medicare benefits.
“These criteria need to be updated
to allow affected individuals to receive
care early on,” said Luther. “This would
allow their family members to better treat
the disease’s psychiatric and cognitive
symptoms early on and also allow the
family unit to remain together for longer,
providing a much better quality of life for
the person affected by HD.”
Taking her story to Capitol Hill
In an effort to help individuals with
HD and their families achieve a better
quality of life by improving access to these
much-needed benefits, Luther headed to
Washington D.C. with members of the
HDSA NYA on July 15 and September
22–23 to urge U.S. representatives from
her home state of Wisconsin, adopted
state of Iowa and other states to cosponsor the HD Parity Act.
If passed, the HD Parity Act would
waive the two year waiting period for
Medicare and require the Social Security
Find us on Twitter, Facebook and the web at www.medicine.uiowa.edu/psychiatry/huntingtonsdisease/
momentum from this film will lead to a
national conversation about genetic testing
and the continued search for a cure for
HD and other genetic diseases.
Powers and “Twitch” have received
significant media attention, having been
featured on “CBS Sunday Morning Show”
and in USA Today, Teen Vogue, and The
Stanford Daily. Powers was also given the
2013 HDSA “Giving a Voice to HD”
award.
HD first entered Powers’ life in 2003,
when her mother was diagnosed with the
illness after first showing symptoms in
1999. Powers says she does not remember
her mother before HD, but does have
memories of discrimination her mother
and her family experienced because of her
mother’s drastic mood swings.
When Powers turned 18, the age at
which an individual can be tested for the
HD gene expansion, she decided to do
so and record the testing and everything
surrounding it for this documentary.
“It gave me a lot of control over my
genetic testing experience,” Powers said in
a February 24, 2014 article in The Stanford
Daily. “It was my way of controlling the
uncontrollable. I couldn’t control what
test result I was going to get, but I could
control and manage my film crew.”
Administration to update its guidelines,
giving more individuals with HD access
to these benefits earlier.
While on Capitol Hill, Luther met
with staff members from 21 congressional
offices, as well as meeting in person with
Iowa Sen. Chuck Grassley and Wisconsin
Rep. Reid Ribble.
“I went into it thinking that I should
just be honest,” said Luther. “Some of
the things that happened in my family
after my grandpa began his journey with
HD are disconcerting and difficult for
me to discuss openly. But I think that it’s
important for me to share those aspects
of my story with people so that they can
see how devastating this disease is and
hopefully affect change.”
And affect change she did. After
her visits, Ribble, Wisconsin Rep. Jim
Sensenbrenner and Iowa Rep. Bruce
Braley agreed to co-sponsor the HD
Parity Act. When Luther reached out to
schedule a meeting with Wisconsin Rep.
Ron Kind, he agreed to be a co-sponsor
right then and there.
“I used to find it easy to think that
HD Support Groups:
Des Moines
Valley View Village Conference Room
2571 Guthrie Avenue
Third Sunday at 1:30 p.m.
Mark Hillenbrand
(515) 277-0814
Omaha, Nebraska
Perkins Restaurant
108 L. Street
Second Monday at 6 p.m.
Cathy McNeil
(402) 537-0739
Iowa City
University of Iowa Hospitals and Clinics
Della Ruppert Conference Room
Fourth Sunday at 1 p.m.
Amanda Miller
(319) 335-6640
After receiving her results, Kristen
began the process of taking the footage
she had and making it into an actual
movie. She financed the project largely
through web crowdfunding, receiving
modest donations from a large number of
people.
The screening is cosponsored by the
UI HDSA COE and the HDSA Iowa
Chapter.
Over two visits to Capitol Hill in July and
September, UI HDSA COE Research Associate
Jolene Luther met with 21 congressional offices to advocate for the HD Parity Act.
one single voice in this vast country can’t
really make a difference,” said Luther.
“After convincing three congressmen
to co-sponsor the HD Parity Act, we
are three steps closer to passing it. It’s a
difficult and slow process, but hard work
and persistence pay off.”
Find us on Twitter, Facebook and the web at www.medicine.uiowa.edu/psychiatry/huntingtonsdisease/
HIND-Sight – Summer 2014 – 3
Worldwide analysis of pioneering JHD study
Editors note: After receiving several inquiries,
UI HDSA COE Director Jane Paulsen
shares an update on the state of Juvenile HD
research at the UI HDSA COE.
By Jane Paulsen
UI HDSA COE Director
The Juvenile HD Natural History
Study began in 2005, when the European
Huntington Disease Network started to
support “working groups” for special topics
in HD. We were fortunate to be at the
first meetings of the
EHDN and met
with other interested
professionals
about JHD. We
brainstormed what
we needed to do to
better understand the
Dr. Jane Paulsen
UI HDSA COE Director juvenile form of HD,
and a worldwide
study was launched. The motor exam
was modified. We decided to interview
JHD families and collect research data to
better understand their situation with the
intention of making a difference for the
kids and the families. This information was
gathered via telephone, family journals,
meeting with kids at the HDSA National
Convention, and even traveling to HD
retreats in Arizona. We made home visits
and we had many families who traveled to
the UI HDSA COE to be evaluated.
The response from the JHD
community was amazing, and went beyond
“The Lion’s Mouth
Opens” at UNI
On Sept. 22 in Cedar Falls, two-time
Academy Award nominated director Lucy
Walker (left) screened her film “The
Lion’s Mouth Opens,” a gripping and
powerful documentary telling the story
of director/actress Marianna Palka as her
HD genetic testing results are revealed.
HDSA Iowa Chapter Board Member
Jamie Parish (middle) and UI HDSA
COE Public Relations Coordinator Sean
Thompson (right) joined Walker to
answer questions about the film and HD
following the screening.
Walker was the featured director for
the University of Northern Iowa’s Clohesy
Documentary Film Series.
Photo courtesy UNI/Chris Martin
participating in the study! We quickly had
responses from all over the United States.
Some of the families pulled together to
produce educational materials, and others
took it upon themselves to raise money
to conduct the pilot research. Many
families found support from one another.
We learned a great deal about JHD and
were honored to have the experience of
getting to know so many courageous
people. Without a doubt, the JHD
community changed who I am as a person,
as a mom, as a friend, and as a researcher. As many of you know, recently there
have been great complexities about how
to structure JHD at Iowa. As with all
complex situations, they must be worked
out collaboratively. Recently, we have been
evaluating the best way to move forward.
Sometimes the best way to start a new
chapter is to conclude the old one. It is
with some reluctance and sadness that we
will close out the JHD Natural History
Study at the UI HDSA COE. Analysis
of the data we have already gathered
continues. The international community
has requested to use the data to write
a collaborative medical journal article
detailing our findings, and our participants
will forever be a major and critical
partner in the first worldwide research
collaboration for Juvenile HD! We are
forever grateful to the participants and
families who participated in this research.
You are pioneers in the fight and you
deserve to be applauded. We encourage you to participate in
HD studies currently enrolling at the UI
• Enroll-HD: An observational study for
anyone in the HD community. Contact
Jane Kerr, [email protected], 319353-4955.
• PREDICT-HD: An observational
study of pre-symptomatic individuals,
currently enrolling gene-negative
individuals. Contact Bella De Soriano,
[email protected], 319-353-4212.
• CREST-E: Clinical drug trial for
symptomatic, diagnosed individuals.
Contact Jacky Walker, jacky-walker@
uiowa.edu, 319-353-4537.
the new Kids-JHD study at the University
of Iowa. As you know, we all need to
work together to learn about JHD so
we can develop new treatments and find
ways to provide better care to the patients
and families suffering. We believe in a
research partnership among all health care
professionals, patients, families, friends,
businesses, institutions, support groups,
and researchers, where every voice is
heard. Today, the JHD families are in my
heart, on the walls of my office and
even photographically on the outside of
my cup of tea! Those of you who have
contacted me regarding this study have
touched me and renewed my passion for
all of you. Please know I’m not going
anywhere. I will be right here and I will
forever be an advocate for JHD. Amanda Miller
1-308 MEB
Iowa City, Iowa 52242
(319) 335-6640
[email protected]
www.facebook.com/UIHDcenter
Fruit, veggies may affect physical, mental health
Excerpted from “Eating five portions
of fruit and veg a day is also good for brain
and helps prevent depression” by Madeline
Davies in Mail Online on Sept. 25, 2014
Five daily portions of fruit and
vegetables won’t just help stave off disease
— they could also keep the blues away.
A new study has found a person’s
mental wellbeing may be closely linked to
how much fresh produce they eat.
Mental wellbeing was defined as
a state in which people feel good and
function well, the researchers said.
Optimism, happiness, self-esteem,
resilience and good relationships with
others are all part of this state, they added. More than a third of people with good
mental wellbeing ate five or more portions
of fruit and vegetables a day, compared
with only 6.8 percent who ate less than
one portion.
A further 31 percent of those with
high mental wellbeing ate three to four
portions and 28 percent ate one to two. File photo/Tim Schoon/Iowa Now
A harvest like this might help improve
wellbeing, according to researchers.
Previous research has shown
that eating plenty of fresh fruit and
vegetables helps prevent people from
developing more than one chronic disease. Chronic diseases include high blood
pressure, very high cholesterol, diabetes,
arthritis, hepatitis, heart disease, asthma,
stroke and cancer.
The study—carried out by Warwick
University’s medical school—used figures
from the Health Survey for England.
It found the effect on mental
wellbeing from eating more fruit and
vegetables was found in men and women.
Dr. Saverio Stranges, who led the
study, said: “Along with smoking, fruit
and vegetable consumption was the
health-related behavior most consistently
associated with both low and high mental
wellbeing.”
Researchers said mental wellbeing
is strongly linked to mental illness and
mental health problems like depression
and anxiety. It is important not just to protect
people from mental illness but because it
protects people against both common and
more serious physical diseases, they added.
Co-author Professor Sarah StewartBrown said: “Mental illness is hugely
costly to both the individual and society
... It has become very important that we
begin to research the factors that enable
people to maintain a sense of wellbeing.”
The study was published in the BMJ
Open medical journal.