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					           HDSA Minnesota
Highlights
                                                                      Fall 2011


                                                                                  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

          F
                  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. 
                                                                                     UPCOMING EVENTS
Bryan Viau
                                                                                     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 bryanv23@yahoo.com.
    DO CTO R’S CO R NER




                                     It Takes a Community. . .
                                     Martha A. Nance, MD
                                     Hennepin County Medical Center HDSA Center of Excellence




                                   T
                                   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!
2
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
                                                                                                  Altru Hospital
                                                                                                  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
                                                                                                  jhancock@hdsa.org.




                                                                                                                                         3
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 bill.mn.hdsa@gmail.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
                                                                                               www.hdfoundation.org
                                                                                               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
                                                                                         masmussen@hdsa.org
                                                                                         CELL: (612) 702-9523
                                                                                         OFFICE: (763) 502-1407
                                                                                         Fridley, MN 55432
                                                                                         7362 University Avenue, Suite 303
                                                                                         HDSA Upper Midwest Reg. Director
                                                                                         Michelle Asmussen
                                             Fridley, MN 55432                             jhancock@hdsa.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
U.S. Postage
Non-Profit Org.                                                                                                RESOURCES

				
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