Newsletter 1.2
Download this newsletter in PDF format: Volume 1.2 (available soon)

FALL 2004-WINTER 2005
VOL. 1, NO. 2

LAST TUESDAY'S MEETING
At Candler’s Heart & Lung Building next to main entrance.
Fall/Winter Meetings:
September 28 (OT/PT)
October 26
November 30
December 10 (S.C. Holiday Dinner)
January 25
February 22

Candler Hospital, Heart & Lung Building, 2nd floor, Rm. 2  
5353 Reynolds St. (at DeRenne)
Savannah, GA
6:00 pm   

WHERE ARE WE: NOW AND TOMORROW
By Sandra Freyermuth
We have turned into a full-fledged group dedicated to meeting the various needs of area HD families. Some exciting things are on the horizon; starting with the formation of a board and filing for nonprofit status. Initial board members will be Kermit Henninger from South Carolina, and Alison Walmsley, Cynthia Arnsdorff, and myself from Georgia. A class at SCAD is helping us develop a web site (hint-hint…we need someone to help maintain the site). A grad student, Rebecca Boehm, is doing our logo. What would we do without Tanya Blase? She is maintaining our mailing list of over 80 names of attendees and donors, and sending monthly e-mails. The “money man” is our treasurer, Charlie Arnsdorff, who keeps our spending in line. Thanks! Our vision for the future includes support, education, advocacy, DONATIONS and simply sharing. On that note, please join us on December 10th in South Carolina for an evening filled with holiday cheer.

Jasper’s Porch
Lakeside Dining
Join us on December 10th in South Carolina for a holiday dinner at Jasper’s Porch by the beautiful Blue Heron trail. Stay and enjoy the Parade of Christmas Lights, which encircle the wheelchair-friendly .6-mile lakeside trail. One block from I-95, Ridgeland. For information call 912-964-0455.

Huntington’s Disease May Awareness Month
Doctors’ Program:
Ruth Abramson, PhD, FACMG, Professor and Director of the HD Test and Clinical Services Center in Columbia, SC, associated with the University of South Carolina. John Morgan, MD, PhD, HD Clinic Director and Asst. Professor with the Medical College of Georgia in Augusta, GA. William Garrett, MD, Neurologist with he Neurological Institute of Savannah, P.C. Simply amazing! On the evening of May 18th forty-five people came together for the first time in the Lowcountry to learn about Huntington’s Disease. Dr. Morgan started the evening with an in-depth presentation on “What is Huntington’s Disease?” and then the group broke for dinner. HD families shared stories and a wonderful buffet. A special thank you to the many who brought or donated food: Kay’s BBQ for the homemade lemonade, Thompson’s IGA for their fried chicken, Snook’s grocery for snacks, and Hodge’s fresh strawberries - dipped in chocolate. Afterwards, the group listened to Dr. Abramson address “ HD Research” and then Dr. Garrett joined in to end the program with a Q & A session. The Institute for Neurosciences at St. Joseph’s/Candler was a partner in our program and, along with the doctors who spoke for free, deserve a big thank you!

Disclaimer:
In articles the mention of services or products are not an endorsement. Opinions are not necessarily those of the Lowcountry’ s HD Support/Education Group. We recommend that any change in services or treatment for HD be made only with the approval of an individual’s physician.

Highlights of the Doctors’ “Huntington’s Disease and Research” Presentation
Three physicians, Dr. Abramson, Dr. Morgan, and Dr. Garrett, talked about HD with HD families, caregivers and health care professionals. Dr. Morgan gave an in-depth overview of HD beginning with Dr. George Huntington who first recognized the disease in 1872.  There are 30,000 people in the United States with HD, meaning nearly 200,000 at risk. Each child of an HD person has a 50-50 chance of inheriting HD. He explained degeneration of nerve cells, the Huntingtin protein, and DNA structure and CAG counts.

Dr. Ruth Abramson drew on her many years of working with HD persons to say that each HD individual is unique. How the disease appears, age of onset, response to treatment and how long a person lives is different in each HD person. Treatment research may involve many different approaches such as tissue research, physical change in brain structure,  therapeutic drug intervention, and environmental enrichment.

Some treatments are still in the “mice” stage and may or may not be effective in “man”. Treatments tested in HD persons: d-Alpha Tochopherol, Coenzyme Q, Remacemide, Rituzole, Minocycline, Creatine and EPA.

Many topics were covered during the Q & A session. Dr. Garrett discussed testing in the Lowcountry for at-risk persons and variables with different labs. The doctors talked about understanding CAG counts, stem cell research, and the importance of maintaining a healthy lifestyle. (Research program handouts available.)

EDUCATION UPDATE
Enhancing Independence…More Than a Balancing Act
Presented by Alison Walmsley, OT, Orthopedic Center, PC, and
Keith Sutton, PT, St. Joseph’s/Candler.

On September 28, 2004, our members had the opportunity to hear Keith and Alison give suggestions on how to prolong an HD person’s independence. Keith talked about how to improve one’s balance and the role physical therapy can play in Huntington’s Disease.  He stressed the point that just because one may have had a couple of falls that it is not a reason to give up. Routine exercises can improve an HD person’s ability to function and increase stamina. Alison gave an interactive program that included the chance to see many aids that she passed around and we had the opportunity to use. She touched on areas of the home that present problems - the kitchen, the bath, the bedroom - and gave recommendations for help.

GOOD CONTACTS TO HAVE
National HDSA Mailing List
1-800-345-HDSA

Georgia Chapter Mailing List
770-279-9207

Emory’s HD Center of Excellence (Atlanta, GA)
404-728-4957

Medical College of Georgia (Augusta, GA)
706-721-2798

HD Test & Clinical Services Center

LOW COUNTRY LIBRARIES: HUNTINGTON'S DISEASE INFO
Walk into a library in the Lowcountry and ask a librarian for an HD book and you’ll often find that none are listed.  However, that is about to change. Our group is working on a list of books that three library systems have agreed to purchase.


NEW HD CLINIC IN AUGUSTA SIGNING UP FOR COHORT STUDY
A new once-a-month Parkinson’s/HD multidisciplinary clinic at MCG will include OT, PT, speech therapy, psychiatry, neurology, and a geneticist.  Patients are being asked to sign up for the COHORT study – a long-term observational study for HD and at-risk persons. A once-a-year free visit required.  Call Lisa Woodward at 706-721-2798 for more information.

WEB SITES: MEMBERS' FAVORITES
One of the tidbits everyone likes to share is Huntington’s Disease web sites.  We do not endorse these sites and advise you to use your own judgment as to accuracy.

hdsa.org
hdac.org
hopes.stanford.edu
huntingtons.info
hdlighthouse.org

TO CONTACT US FOR INFO
Call or e-mail Sandra Freyermuth at 912-964-0455 or sandrasfrey@aol.com. Donations received for our group:

Mr. & Mrs. Arte Heidt
Anonymous Donor

A special thank you to the Holiday Inn Express in Port Wentworth at I-95 for offering free rooms to out-of-town medical personnel attending our meetings.

HDSA’S 2005 ANNUAL NATIONAL CONVENTION
JUNE 24th – 26th
Atlanta, GA

Consisting of forums and workshops on care, research, and advocacy led by HD experts. The convention offers an opportunity to share, network and learn about HD. An awards dinner gala will be held Saturday evening. 

Atlanta Hilton
255 Courtland Street

For hotel rates, convention agenda, and online registration go to www.hdsa.org in January 2005.

«back to the top