Living With HD
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National Youth Alliance
Thursday, June 23
On Thursday, June 23, the day before the start of the 26th Annual Convention, three of HDSA's most important groups met for comprehensive workshops.
Before the workshops got underway, everyone gathered at the front entrance of the Convention Hotel to welcome Marie Nemec, Charlotte Reicks and Gary Heiman, who were completing the "Plains to Lakes" bike ride to raise funds and awareness of Huntington's disease. This was Marie's 13th ride and a great kick-off to the Convention activities.
After congratulations and many photos, the three groups began their work.
HDSA Leadership Day is an opportunity for Chapter and Affiliate Leaders, to meet with HDSA National and Field staff to discuss important issues and participate in workshops designed to build skills such as Board Recruitment, how to promote the HDSA Brand, fundraising techniques and other ways to help build their local chapter or affiliate. This year 53 people attended Leadership Day, representing 25 chapters and 9 affiliates. They were joined by 5 NFC (National Field Committee) members, 8 members of the Regional Staff an 3 members of the National Staff.
This year's Professional Training Day offered sessions on
Thirty-two HDSA social workers attended the sessions, as well as 16 professionals from the Minnesota area and a representative from the Huntington Society of Canada. Among the topics discussed were ethical issues facing an HD Social Worker, Behvior issues in long term care facilities, best practices for defusing crisis situations and issues of hospice an end of life care. A question and answer session, featuring several of the most experienced HDSA Social Workers sharing best practices concluded the session.
The NYA Committee had a comprehensive program in place for the 85 youth and young adults who attended NYA Day. Morning sessions focused on the different ways for young people to participate as active community members. NYA members shared their experiences as advocates for the Huntington's Parity Act, as fundraisers and as mentors to other young people affected by HD. The participation by young adults from foreign countries who had attended the International meeting added a different perspective to many of these discussions. During the afternoon session, small working groups, broken down by age allowed the attendees to share their personal perspectives and discuss the challenges of growing up in an HD family.
That evening, NYA Members spent several hours at "Feed My Starving Children."The group packed meals that would be shipped to Africa where they are distributed to unernourished young people.