A few of Hennepin County Medical
And the Winner Is . . . Everyone! Center’s (HCMC) Center of Excel-
lence staff participated in the
National HDSA Convention 2011 as
or the third year in a row, the Minnesota HD Chapter re-
ceived a variety of awards at the HDSA annual convention speakers and volunteers. Pictured
held in the Twin Cities on June 24-26. The newsletter you’ve here are (L to R) Mary Morgan
come to enjoy was recognized as “the best” in the organization thanks to Jill (occupational therapist), Dawn
Sinclair and Beth Holmes who lead that effort. The Blast dinner event was Radtke (research), Stacey Hoffman
recognized for its explosive financial growth over the previous year, thanks
(registered dietician), Dr. Martha
to Emily Viau and her team of dedicated volunteers. And the chapter itself
was recognized for our efforts in hosting the most well-attended convention Nance (neurologist), and Sally
in the history of the organization. Gorski (speech pathologist).
The Minnesota chapter was thankful to be able to host this year’s Thanks to all for a successful
convention. Along with our partners from Lundbeck and countless other convention!
generous donors, we were able to provide financial assistance to over 200
attendees to the convention. Because the convention moves to a different
geographic location each year, this may have been the first or last time that TABLE OF CONTENTS
many could attend. Doctor’s Corner p. 2
Organizing, hosting, and executing the convention was a gigantic under-
taking that required a lot of cooperation and coordination. Our friends and Support Groups p. 3
partners at the HDSA national office, the field offices, and Bill Marsch are Upcoming Events p. 3
true professionals and fun to work with. We should all be grateful that these
Past Event Reviews p. 3
professionals have chosen HD and HDSA as their place to work.
Lastly, I was blessed with the opportunity to make the keynote address HD Parity Act p. 4
during the opening ceremonies. During that opening, I reminded everyone Resources p. 4
that we each have a choice on how we live our lives. Despite all challenges
we face, the gift of life is not to be taken lightly. I would like to end my
second term as president of the Minnesota HD chapter with the following HELP FOR TODAY.
words I shared at the convention: HOPE FOR TOMORROW.
The HDSA Society is a national,
This is the beginning of a new day. You have been given this day
voluntary health organization
to use as you will. You can waste it or use it for good. What you do
dedicated to improving the lives
today is important because you’re exchanging a day of your life for
it. When tomorrow comes, this day will be gone forever, and in its of people with Huntington’s
place you can leave something behind . . . let it be something good . . . Disease and their families.
let it make a difference in our world.
You have a choice, we have the courage, and together we can create hope
and make a difference in our world.
Team Hope Walk . . . . . Sept. 18
HDSA Minnesota Chapter President
If you have an experience from the convention that you’d like to share,
please send me an email at firstname.lastname@example.org.
DO CTO R’S CO R NER
It Takes a Community. . .
Martha A. Nance, MD
Hennepin County Medical Center HDSA Center of Excellence
he saying goes, it takes a village to raise a child. I always say it
takes a community to guide a family through the course of
Huntington’s disease. And what an amazing community we have
in Minnesota. I am extremely proud of everyone connected with the HD community in our state
for the work they have done over the last few months to help each other and to improve the
lives of others with HD around the country.
There is no other state in the country that has HD group of the HD unit at Good Samaritan are unsung heroes who
homes started by three independent families. There are spend every day caring for people in the late stages of HD,
only a handful of other states that have a long-term care and they still found the energy to volunteer their support
facility with a unit specializing in HD. And there is no group at the convention.
of guys like the friends of Wade Wallen, who still poke, If anyone didn’t get to purchase a copy of the cookbook,
jostle, and rib each other, just like they did as high school Recipes from the Heartland, at the convention, you should
hockey friends and competitors in Bloomington in the look for it at upcoming events and get one! This cookbook
1970s, at their annual golf tournament to support Wade was created by your friends and neighbors in the HD com-
and his family and HD research. munity and includes a variety of recipes that are good for
We should all have high school friends who care that people with HD! It is a wonderful resource and is fun to
much. Or friends like those of the Priebes, who sell out the read through. It also contains tips from the professional
Hits for HD golf tournament in Anoka each year. Or a com- staff at the Hennepin County Medical Center HD Clinic
munity such as Belle Plaine, which rallies around Joe Fahey about how to adapt the recipes for someone who needs
and his family at the annual auction and dinner event they more calories or different food textures.
hold each year. The generous folks in Belle Plaine provide us Virtually everyone on the professional team at HCMC
with a “fund in need” each year, so that we can give electric also contributed to the convention either by giving a lecture,
toothbrushes, Target gift cards, and medical alert bracelets manning a booth, or conducting a support group. The HD
for free to patients in need. What amazing communities! Clinic staff is also an important part of the HD community
The energy of the Minnesota HD community is even — many have held leadership roles in the Minnesota HD
beginning to leak across the border into Wisconsin, where chapter in addition to their professional work.
I recently attended the 2nd-annual Davis Drewiske hockey Last, there were the countless people who volunteered
event, where old University of Wisconsin hockey buddies their time to support the convention, including the crossing
(now on various professional teams) come to help ten to guards guiding the three hundred people who showed up at
twelve year-olds in the Hudson area play a 3-on-3 hockey 7 a.m. for the Saturday walk. They made sure street traffic
tournament in honor of Jake Dowell, a professional hockey and the HD walkers did not meet, and there was even a
player whose father has HD. young man assigned to guard a mud puddle along the
But there is no community like the community of pathway to make sure that no one accidentally slipped
Bloomington, which welcomed almost 1,000 people with or got muddy.
HD and their families from all over the country to the The Minnesota HD community is a special group of
national convention in June. This was the largest HD people. Confronting a challenging illness like HD requires
convention ever, and arguably, the best one ever! courage and creativity, and no one can do it alone. Here,
Did anyone go to the activity room during the conven- no one is alone. You are in the midst of an amazing
tion? If you did, you saw that you could have your nails community that will help you navigate through the course
painted by Ivy, participate in exercise activities with Sean, of the disease. Let the community be a support, and pretty
get a massage by interns from the Center Point Massage soon you, too, can become part of something bigger and
School, and engage in music and art activities led by the better than anything you could have done alone! THANKS
creative staff from Good Samaritan Care Center. The staff TO ALL OF YOU!
H E ALTH AND W E LLNESS SUPPORT GRO UPS
Minnesota Team Support Groups
Hope Walk Support group meetings are for
Sunday, September 18, 2011 people who are at risk for HD,
White Bear Lake High School, South Campus persons with HD, and families
3551 McKnight Road North of people with HD.
White Bear Lake
9:00 a.m. Registration RICHFIELD, MN
10:00 a.m. Walk starts Oak Grove Lutheran Church
7045 Lyndale Avenue South
R egistration is FREE for participants who bring $120 in
donations (online/cash/check). Start fundraising now
at www.firstgiving.com/hdsa-mn. Bring a copy of your
Every third Saturday,
10:30 a.m.–12 p.m.
Sept. 17, Oct. 15, Nov. 19
online fundraising total and/or your collected donations
Facilitator: Jessica Hancock
to the walk for free registration.
It’s not just walking! There are activities for all — face
painting, wacky hair, carnival games, raffles, dunk tank, ROCHESTER, MN
food, music, and more. Bethany United Methodist
1835 19th Avenue NW
REGISTRATION FEES: Every third Saturday, 3 p.m.
$15 prior to September 11 Sept. 17, Oct. 15, Nov. 19
$20 per person on walk day for individuals Facilitator: Jessica Hancock
$15 per person on walk day for groups of four or more
(Five and under are free of charge)
GRAND FORKS, ND
Register online at www.hdsa.org
Meeting rooms F and G
Hits for Huntington’s 1200 S. Columbia Road
Every second Saturday,
The 9th-annual Hits for Huntington’s Golf Classic was a HUGE 10:00 a.m.–12 p.m.
success and golfers reported the best weather in the history of
Sept. 10, Oct. 8, Nov. 12
the tourney. This special event was the vision of Tom Priebe, who
started the tournament to bring families and friends together to
Facilitator: Jayne Brown, LSW
raise money to help find a cure for HD. We were fortunate again (701) 352-1620
this year to have nearly 144 golfers participate in the tournament!
Prizes were awarded to the Folisi Group for the lowest score, with DULUTH
the Lundbeck group in second, and the Kelly Clark foursome in third. In addition to golf, Benedictine Health Center
there was a wonderful social hour, buffet-style dinner, and an outstanding silent auction
935 Kenwood Avenue
that was held in Bunker Hills’s newly remodeled clubhouse. An event of this size would not
be possible without the help of volunteers, sponsors, and committee members who so
Every fourth Saturday, 10:30 a.m.
graciously donated their time and resources. Galliard Capital Management has been a birdie Sept. 24, Oct. 22, Nov. 26
sponsor since the inaugural Hits for HD event in 2002. In addition to Galliard, the event Contact Jessica Hancock.
committee would like to extend a sincere thank you to our other sponsors: Mauer Chevrolet,
the Minnesota Timberwolves, Sonshine & Hope, Inc., Wentz Associates, the Car Wash ST. CLOUD
Company, and Canon Business Solutions. In addition to the many hole and cart sponsors,
If you are interested in attending a
we would also like to thank each and every one of the private donors/golfers. Finally, a BIG
thank you to the event committee for all its hard work and dedication: Susie Anderson,
support group in St. Cloud area
Don Ellingson, Ed Folisi, Jerry Peterson, Holli Priebe, Rob and Amy Wilkey, Todd Olson, Sandy please contact Jessica Hancock.
Wilkey, Karen Berke, Sue Stachel, and Angie Priebe. We look forward to seeing you all at
Bunkers Hills in Coon Rapids for the 10th-annual Hits for Huntington’s Golf Classic! For more information, contact
Jessica Hancock, LSW, at
(612) 371-0904 or
Advocacy Action: Frustrated With Social Security?
Tell Us Your Story!
hanks to all who participated in the call-in day to tell about how having to wait two years for Medicare
on May 31 to advocate for our U.S. senators and eligibility imposed a hardship on your family? If so, we’d
T representatives co-sponsoring the HD Parity Act like to be able to relay your experience to our senators,
(Senate S648 and House HR 718). Collin Peterson, MN Amy Klobuchar and Al Franken, when we visit them in
District 7 (western Minnesota), became a co-sponsor on their Minnesota offices in the coming months. We will
June 3, 2011! There are now eighty-four co-sponsors in maintain your anonymity in conveying these stories (no
the House and six in the Senate. This legislation directs names or identifying information will be used). Please
the Social Security Administration to modernize their write a few sentences or a paragraph sharing your story
criteria for what constitutes “disability” in Huntington’s and send it to email@example.com. You will not
disease (it’s not just chorea), and waive the two-year receive a reply unless you request one, and we will not
waiting period that currently exists before persons pass your name or email on to anyone. We appreciate
disabled by HD can receive their Social Security being able to let our senators know through your own
disability and Medicare benefits. words that the HD Parity Act is important!
Have you or your family experienced problems If you would like to come along the next time we go to
because the Social Security Administration did not the senators’ offices in the Twin Cities, just let us know
recognize how HD was affecting a loved one’s ability and we will get back to you!
to continue in their employment? Do you have a story
Hereditary Disease Foundation
(800) 345-HDSA(4372) · www.hdsa.org
New York, NY 10018
505 Eighth Avenue, Suite 902
HDSA National Office
(612) 873-2515 · www.hcmc.org
Minneapolis, MN 55415
701 Park Avenue
Hennepin County Medical Center
HD Center of Excellence Clinic
CELL: (612) 702-9523
OFFICE: (763) 502-1407
Fridley, MN 55432
7362 University Avenue, Suite 303
HDSA Upper Midwest Reg. Director
Fridley, MN 55432 firstname.lastname@example.org
7362 University Avenue, Suite 212 (612) 371-0904 · www.hdsa.org/mn
HDSA Minnesota Chapter Fridley, MN 55432
7362 University Avenue, Suite 212
Permit No. 435
Twin Cities, MN
Jessica Hancock, Social Worker
PAID HDSA Minnesota Chapter
Non-Profit Org. RESOURCES