OKHDSA

2010-06-06T19:31:00.002-05:00

Welcome to the Oklahoma Chapter of the Huntington's Disease Society of America (OKHDSA). We hope that you can find this website as a source of information and guidance on Huntington's Disease. There are numerous events and support groups for Huntington's Disease in Oklahoma that provide support for HD families, as well as help raise funds for HD research. Half of all family members who have a parent affected with Huntington’s disease are all at risk for getting the HD gene. Please browse our site, and should you have any questions, please contact us for any information.

What is Huntington’s Disease?
Huntington's Disease (HD) is a devastating, hereditary, degenerative brain disorder that results in a loss of cognitive, behavioral and physical control, and for which, presently, there is no treatment or cure. HD slowly diminishes the affected individual's ability to walk, think, talk and reason. Symptoms usually appear in an individual between 30 and 50 years of age and progress over a 10 to 25 year period. Eventually, a person with HD becomes totally dependent upon others for his or her care. More than 30,000 people in the United States are currently diagnosed with HD. Each of their siblings and children has a 50 percent risk of developing the disease. Although medications can relieve some symptoms in certain individuals, research has yet to find a means of conquering or even slowing the deadly progression of HD.

How do proceeds benefit HDSA?
All proceeds support HDSA’s efforts to provide help for today, hope for tomorrow for families affected by HD.

Thank you!

2010-06-06T19:29:00.000-05:00

Thank you! Your submission has been received!

2010-06-06T19:25:00.005-05:00

Dear Physician or Nursing Home, Thank you very much for responding to the Huntington Disease Society of America (Oklahoma Chapter) request for information concerning how this disease affects your patients and your practice. Huntington’s Disease is an inherited illness that affects hundreds if not thousands of Oklahomans. We are interested in learning how we can better serve this patient population. You can help us a very great deal if you could provide us with some feedback to the following questions.
1. Have you ever had any patients who have been diagnosed with Huntington’s Disease?
Yes No Don't Know / Not Sure
2. Do you currently have patients who have been diagnosed with Huntington’s Disease?
Yes No Don't Know / Not Sure
3. If yes to #2, how many Huntington’s patients do you now see?
One Two More than two
4. How are these patients distributed in families?
One individual from one family Two or more individuals from a single family Two or more individuals from more than one family
5. Which of the following services might improve the quality or delivery of care to your Huntington’s patients and/or their families? (Check all that apply)
Financial assistance for genetic testing Access to genetic counseling Transportation to doctor visits or other medical related appointments Patient and/or caregiver support groups Daycare services for patients Daycare - Periodically so that caregivers can have an occasional break Daycare - Every day so that caregivers can remain employed
6. Assuming that the necessary financial resources were available, do you perceive that there is a need for a group home for Huntington’s patients in Oklahoma that provides assisted living and/or nursing home care?
Yes No Don't Know / Not Sure
7. Do you think that any of your patients would benefit now or in the future from a group home for Huntington’s patients that provides assisted living and/or nursing home care?
Yes No Don't Know / Not Sure
8. May we call you at a time of your convenience for a brief (10-15 minute) conversation about Huntington’s disease?
Yes No
Name

Occupation

Name of Practice or Facility

Street Address

City

State

Zip

Email Address

Phone Number

Best time to call

Additional Comments

2010-06-06T19:25:00.003-05:00

Woody Guthrie Festival
July 14-18, 2010 in Okemah, Oklahoma
www.woodyguthrie.com

Welcome to the Oklahoma Chapter of the Huntington's Disease Society of America (OKHDSA). We hope that you can find this website as a source of information and guidance on Huntington's Disease. There are numerous events and support groups for Huntington's Disease in Oklahoma that provide support for HD families, as well as help raise funds for HD research. Half of all family members who have a parent affected with Huntington’s disease are all at risk for getting the HD gene. Please browse our site, and should you have any questions, please contact us for any information.

What is Huntington’s Disease?
Huntington's Disease (HD) is a devastating, hereditary, degenerative brain disorder that results in a loss of cognitive, behavioral and physical control, and for which, presently, there is no treatment or cure. HD slowly diminishes the affected individual's ability to walk, think, talk and reason. Symptoms usually appear in an individual between 30 and 50 years of age and progress over a 10 to 25 year period. Eventually, a person with HD becomes totally dependent upon others for his or her care. More than 30,000 people in the United States are currently diagnosed with HD. Each of their siblings and children has a 50 percent risk of developing the disease. Although medications can relieve some symptoms in certain individuals, research has yet to find a means of conquering or even slowing the deadly progression of HD.

How do proceeds benefit HDSA?
All proceeds support HDSA’s efforts to provide help for today, hope for tomorrow for families affected by HD.

HDSA ADVOCACY

2010-01-03T01:45:00.002-06:00

HDSA ADVOCACY: Help Make HD a National Priority!

Nearly everyone affected by HD has trouble obtaining disability benefits. HDSA is leading a national campaign to address this problem, and we need your help!

A bill in Congress, HR 678, The Huntington’s Disease Parity Act of 2009 would revise the current Social Security Administration (SSA) guidelines for determining disability caused by HD. It would also eliminate the two-year waiting period to receive Medicare benefits after a disability determination is made by SSA. If enacted into law, HR 678 would significantly improve the lives of everyone affected by HD.

Support our grassroots HD Movement! Take 2 minutes right now to contact your Representative about HR 678.

Does your Congressman support HR 678? (Click here to see if your Rep is on board). So far, over 60 Representatives have agreed to cosponsor HR 678, largely because their constituents have asked them to support it. By contacting your Representative, sharing your personal story, and asking him/her to cosponsor HR 678, you can join our cause! Click here for a sample letter to send to your Congressional representative.

If your Representative is already a co-sponsor, congratulations! Now invite your family and friends to join our effort by forwarding this message to them.

Since we need support from both houses of Congress, you can also send an email asking your two Senators to introduce the Huntington’s Disease Parity Act in the Senate. Click here for a sample letter to send to your U.S. Senators.

Change cannot occur without your help. Persistence is key if we want change. Please join the HDSA advocacy movement today.

If you would like more information about HDSA Advocacy, HR 678, or help in scheduling a home office visit with either your Rep or Senators, please contact Jane Kogan at the HDSA national office at jkogan@hdsa.org or visit the HDSA Advocacy Page

2009-09-13T22:53:00.004-05:00

Thank you for your donation to the Oklahoma Chapter of the Huntington's Disease Society of America! We appreciate your generosity!

Should you have any questions about your contribution, please feel free to contact us via email at okhdsa@sbcglobal.net.

2009-08-16T23:10:00.007-05:00

Invitation to the 2010 Celebration of Hope!

The Celebration of Hope showcases Oklahoma luminaries from different walks of life. The primary mission of the HDSA is to promote and support research to find a cure for Huntington’s while providing help to individuals and families affected by the disease. HDSA seeks to educate the public and health care professionals about HD.

Huntington’s Disease (HD) is a devastating, hereditary, degenerative brain disorder that results in a loss of cognitive, behavioral and physical control, and for which, presently, there is no treatment or cure. HD slowly diminishes the affected individual’s ability to walk, think, talk and reason. Symptoms usually appear in an individual between 30 and 50 years of age and progress over a 10 to 25 year period. Eventually, a person with HD becomes totally dependent upon others for his or her care. More than 30,000 people in the United States are currently diagnosed with HD. Each of their siblings and children has a 50 percent risk of developing the disease. Although medications can relieve some symptoms in certain individuals, research has yet to find a means of conquering or even slowing the deadly progression of HD.

Please join us in our Celebration of Hope on Saturday evening, May 22, 2010, and inscribe your congratulations in our dinner journal. The dinner journal will be a keepsake piece, with contributions from the many who know and admire our leaders and who wish to endorse the HDSA programs of care and research.

Request Information

2009-08-16T23:08:00.013-05:00

Note: The mark * denotes required fields.

2008-12-17T16:02:00.010-06:00

Thank you for your interest in the Oklahoma Chapter of the Huntington's Disease Society of America.

Please feel free to continue browsing our site with the links to your right.

Resources

2008-12-17T15:44:00.008-06:00

Social Networking and Online Support for people affected by Huntington’s Disease

Huntington’s Disease Information and Community

Huntington’s Disease Advocacy Center

Huntington's Dance

The RCAN1-1l gene and HD - Huntington's Disease Society of America

Stem Cell Breakthrough - Huntington's Disease Society of America

High Hopes for a New Kind of Gene - Science & Nature Smithsonian Magazine

Huntington's Disease Drug Works - current clinical trials and other drug related news for HD

Richard M. Dubinsky, M.D. - Department of Neurology, Associate Professor at the University of Kansas Medical Center

Huntington Study Group - Seeking Treatments That Make A Difference for HD

University of Oklahoma, Department of Neurology

Xenazine and Lundbeck's REACH (patient assistance) program

Photo Gallery

2008-12-17T15:38:00.010-06:00

Team Hope Walk 2010

Celebration of Hope 2010

Educational Seminars

Celebration of Hope 2010

Celebration of Hope 2009

Celebration of Hope 2008

National Convention 2007

If you are unable to see the photo galleries, you may need Adobe Flash installed on your computer to view it. Click below to download it.

Newsletters

2008-12-17T15:31:00.018-06:00

News

2008-12-17T15:23:00.006-06:00

Press Release for Celebration of Hope 2009

Press Release for Dr. Goodman

Edmond Sun Article on Oklahoma City's own Cathy McKinney

(If you are unable to see the above embedded video, please click here.)

News Release on 2008 Celebration of Hope

News Article on Brooks & Dunn Musician

News Release on "Christine" Memorabilia

Inhofe Resolution Designates ‘National Huntington's Disease Awareness Day’

Announcement of the Annual HDSA Convention in Oklahoma City

Flowers for Huntington's!!!

Don't Throw that Printer Cartridge or Cell Phone!

igive.com: Change online shopping for good.

Board Members

2008-11-13T15:12:00.018-06:00

President
Amy Hall
amyphall@gmail.com

Vice-President
Amy Hearn
amy-hearn@am.com

Treasurer
Erin Berumen
erinberumen@yahoo.com

Public Relations Chair

Education Seminar Chair
Ingrid Young
iyoung@pruhomequest.com

Newsletter Editor
Jennifer Nance
okhdsa@sbcglobal.net

Members
Jenny Clark - Jclrk69@msn.com
Dorothy Hearn
Lacey Lett - laceylett@gmail.com
Andrea Mullin - ondreah@gmail.com
David Ralph - dralph@igbs.us.com
Jennifer Seaton - jseaton@okcchamber.com
LaDonna Sifers - lsifers@accesscomtech.com
Brent Skarky - bskark@hotmail.com

Medical Consultant
Marilee Monnot, Ph.D.
405.271.8001 ext. 46046
Marilee-monnot@ouhsc.edu

Scientific Advisor
John Mulvihill, M.D.
405.271.8685
john-mulvihill@ouhsc.edu

Webmaster
Kim Nguyen
nguyenlekim@gmail.com

National and Other Chapters

2008-11-13T14:36:00.008-06:00

National Huntington's Disease Society

Northeastern Oklahoma Huntington's Disease Support Group

Other Chapters

About the Huntington’s Disease Society of America
The Huntington’s Disease Society of America is the largest 501(c)(3) non-profit volunteer organization dedicated to improving the lives of everyone affected by Huntington’s Disease. Founded in 1968 by Marjorie Guthrie, wife of folk legend Woody Guthrie who lost his battle with HD, the Society works tirelessly to provide the family services, education, advocacy and research to provide help for today, hope for tomorrow to the more than 30,000 people diagnosed with HD in the United States. Notably, HDSA funds the HDSA Coalition for the Cure, a collaboration of 16 international researchers, as part of the HD Drug Research Pipeline, which develops potential therapies to treat and eventually cure HD; and HDSA also supports 21 Centers of Excellence at major medical facilities throughout the U.S., where people with HD and their families receive comprehensive medical, psychological and social services, in addition to physical and occupational therapy and genetic testing and counseling. The Society is comprised of 38 local chapters and affiliates across the country with its headquarters in New York City. Additionally, HDSA hosts more than 140 support groups for people with HD, their families, caregivers and people at-risk, and is the premiere resource on Huntington’s Disease for medical professionals and the general public. To learn more about Huntington’s Disease and to get involved in HDSA, please visit www.hdsa.org or call 1-800-345-HDSA.

Vision and Mission

2008-11-13T13:37:00.006-06:00

MISSION STATEMENT

The Oklahoma Chapter is our state's voice for Huntington's Disease. We serve as a local advocate in providing support and services for Huntington's patients and their families in coping with the multi-faceted problems associated with HD. We support the national effort in finding a cure for HD.

VISION STATEMENT

We will be a strong, well-known, well-funded, group that is able to provide a variety of useful services to HD patients and families, through promoting awareness, education, research, and generating support from the community.

SPECIFICALLY, THE OKLAHOMA CHAPTER OFFERS:

OKC support group and facilitation capabilities for statewide groups...
Telephone help line and counseling referrals...
Education materials to families, healthcare professionals, and the public...
In service training to nursing homes, hospice groups and interested organizations...
Outings for HD patients...
A central contact point for Oklahomans...
Fund-raising vehicle...

Local Research

2008-11-13T13:34:00.007-06:00

Professor Robert H. Cichewicz, Ph.D

Oklahoma Medical Research Foundation

Events

2008-11-13T13:19:00.019-06:00

Tulsa Area Support Group

Takes place on the third Saturday of each month at 10:00 AM at Carter Healthcare and Hospice, 200 E. Harris Circle, Suite A in Tahlequah.

Call Andrea Mullin at 918-822-1620 with questions.

Del City Support Group

First Wednesday of each month at 7:00 PM at the Del City Christian Church
4340 SE 15th Street

Call Roxy Wilkerson at 405.619.7764 with questions.

Contact

2008-11-13T13:11:00.013-06:00

24-Hour Helpline:
1.877.232.4372

President:
President
Amy Hall
amyphall@gmail.com

Write:
Oklahoma Chapter
Huntington's Disease Society of America
37 NE 63rd
Oklahoma City, OK 73105

Email:
okhdsa@sbcglobal.net

HD Clinic:
405.271.3900

OKC Support Group:
405.236.4372

Tulsa Support Group:
Rhonda Millarr
918.371.1280

Del City Support Group:
405.619.7764

Northeastern Oklahoma Huntington's Disease Support Group
http://www.neokhd.org

Genetic Testing Information:
John Mulvilhill, M.D.
405.271.8685

J.Rodman Seely, M.D.
405.271.6777

Fred Schaefer, Ph.D
918.502.1725 or 866.846.0315

Webmaster:
Kim Nguyen
nguyenlekim@gmail.com

Donations

2008-11-13T13:08:00.016-06:00

How do proceeds benefit HDSA?
All proceeds support HDSA’s efforts to provide help for today, hope for tomorrow for families affected by HD.

Donation checks can be sent to:

Oklahoma Chapter
Huntington's Disease Society of America
37 NE 63rd
Oklahoma City, OK 73105

Donations can also be made with credit card via PayPal.

You do not need a PayPal account to use PayPal. Donations via PayPal are safe and secure.

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