Dystonia Support Group

BEING AN ADVOCATE MEANS STARTING AT HOME:

Motivate your family, friends, business associates, church groups, civic clubs & other groups in our advocacy efforts. I find it’s easier to do something if I’m going to ask someone else to act, too.

One of the best ways to use your voice for change or action is to encourage other people to support you. Taken individually, each action may not seem like a lot, but over time, you will discover that your efforts add up to a unified voice for change or specific action on pending action, especially that affecting your health.

We plead with you to use the tools at our disposal in doing grassroots ADVOCACY for issues involving health care and research to find a cause for Dystonia. Be alert to changes proposed by CMS (Medicare & Medicaid) even if you are not on those programs. Their action typically becomes a model for private insurers, HMO’s and other health-care providers to follow. ADVOCATE FOR INCREASED Natioal Institutes of Health (NIH) FUNDING FOR DYSTONIA & RELATED MOVEMENT DISORDERS.

From time to time, DSG and others with whom we are associated (DMRF, NSDA, NSTA, WEMOVE, etc) will provide sample letters, emails or phone messages for you to use, but the best ADVOCACY is the message you send from your heart.

CONTACTING YOUR SENATORS

Congressman always maintain “local offices”. When emailing or writing a letter, it’s advisable to send it to their local office with a “copy” to their Washington, DC, office. When phoning, you’ll probably get better attention to call the local office.

Senator Richard C. Shelby
United States Senate
110 Hart Senate Office Bldg
Washington, DC 20510-0103
DC phone: 202-224-5744

Email: http://shelby.senate.gov/resources/contact.htm
Website: http://shelby.senate.gov/

Birmingham Office:               Federal Building - Suite 321
Phone: 205-731-1384          1800 5^th Avenue No
                                             Birmingham, AL 35203-2171

Mobile Office:                        Federal Courthouse - Suite 445
Phone: 251-694-4164           113 Saint Joseph Street
                                              Mobile, AL 36602-3623

Huntsville Office:                 Huntsville Int’l Airport - Suite 10127
Phone: 256-772-0460         1000 Glenn Hearn Blvd
                                              Huntsville, AL 35284

Tuscaloosa Office:                Federal Building, Room 240
Phone: 205-759-5047          1118 Greensboro Avenue
                                              Tuscaloosa, AL 35401-2816

Montgomery Office:              Federal Courthouse, Room B-28
Phone: 334-223-7303         15 Lee Street
                                             Montgomery, AL 36104-4055

Senator Jeff Sessions
United States Senate
335 Russell Senate Office Bldg
Washington, DC 20510-0104
DC Phone: 202-224-4124

Email: http://sessions.senate.gov/email/contact/cfm
Website: http://sessions.senate.gov/

Huntsville Office:                  Regions Center - Suite 802
Phone: 256-533-0979         200 Clinton Avenue N.W.
                                             Huntsville, AL 35801-4932

Birmingham Office:              341 Vance Federal Building
Phone: 205-731-1500        1800 Fifth Avenue No
                                            Birmingham, AL 35203-2171

Mobile Office:                        41 West I-65 Service Road
Phone: 251-414-3083          Suite 2300-A
                                              Mobile, AL 36608-1291

Montgomery Office:             7550 Halcyon Summit Drive
Phone: 334-244-7017         Suite 150
                                             Montgomery, AL 36117

CONTACTING YOUR REPRESENTATIVE

1^ST District
Rep. Jo Bonner
422 Cannon HOB
Washington, DC 20515
Phone: 202-225-4931

Email: www.house.gov/bonner

2^nd District
Rep. Terry Everett
2312 Rayburn House Office Bldg
Washington, DC 20515-0102
DC Phone: 202-225-2901

Email: http://wwwc.house.gov/everett/contact/email.asp
Website: http://wwwc.house/gov/everett/

Opp Office: 101 No. Main Street
Phone: 334-493-9253 Opp, AL 36467

Montgomery Office: 3500 Eastern Blvd, Suite 250
Phone: 334-277-9113 Montgomery, AL 36116-1782

Dothan Office: 256 Honeysuckle Rd - Suite 15
Phone: 334-794-9680 Dothan, AL 36305

3^rd District
Rep. Mike Rogers
514 Cannon House Office Building
Washington, DC 20515-0103
DC Phone: 202-225-3261

Email: http://www.house.gov/mike-rogers/contact/index/shtml
Website: http://www.house.gov/mike-rogers/

Montgomery Office: 7550 Halycon Summit Drive
Phone: 334-277-4210 Montgomery, AL 36117

Opelika Office: 1819 Pepperell Parkway, Suite 203
Phone: 334-745-6221 Opelika, AL 36801

Anniston Office: 1129 Noble Street, Suite 104
Phone: 256-236-5655 Anniston, AL 36201

4^th District
Rep. Robert B. Aderholt
1433 Longworth House Office Building
Washington, DC 20515-0104
DC Phone: 20o2-225-4876

Email: http://aderholt.house.gov/IQ_email.shtml
Website: http://aderholt.house.gov/

Cullman Office: 205 Fourth Ave NE - Suite 104
Phone: 256-734-6043 Cullman, AL 35055

Jasper Office:                       Carl Elliott Federal Bldg - Suite 247
Phone: 205-221-2310          1710 Alabama Avenue
                                              Jasper, AL 35501-5400

Gadsden Office:                    Federal Building - Suite 107
Phone: 256-546-0201          600 Broad Street
                                              Gadsden, AL 35901-3745

5^th District
Rep. Robert E. (Bud) Cramer
2368 Rayburn House Office Building
Washington, DC 20515-0105
DC Phone: 202-225-4801

Email: http://cramer.house.gov/NR/exeres/3AFBDAAF-1015-4C72-95FC-474743BC67C2.htm
WebSite: http://cramer.house.gov/NR/exeres/EF138332-33B5-4F6D-A432-76DFA33AC27C.htm

Tuscumbia Office: 1011 George Wallace Blvd
Phone: 256-381-3450 Tuscumbia, AL 35674

Decatur Office:                      Morgan County Courthouse
Phone: 256-355-9406          302 Lee Street
                                              Decatur, AL 35602

Huntsville Office: 626 Clinton Avenue West
Phone: 256-551-0190 Huntsville, AL 35801-4210

6^th District
Rep. Spencer Bachus
442 Cannon House Office Building
Washington, DC 20515-0106
DC Phone: 202-225-4921

Email: http://www.house.gov/writerep/
Website: http://bachus.house.gov/NR/exeres/537B8A60-5856-4086-9AC1-FED8E20C1245.htm

Birmingham Office: 1900 Int’l Park Drive - Suite 107
Phone: 205-969-2296 Birmingham, AL 35243

Clanton Office: 703 2^nd Avenue No or PO Box 502
Phone: 205-280-0704 Clanton, AL 35046

7^th District:
Rep. Arthur Davis
208 Cannon House Office Bldg
Washington, DC 20515-0107
DC Phone: 202-225-2665

Email: http://www.house.gov/arthurdavis/zipauth.html
Website: http://www.house.gov/arthurdavis/

Selma Office: 908 Alabama Avenue
Phone: 334-877-4414 Selma, AL 36701

Livington Office:                   205 N. Washington Street
Phone: 205-652-5834         UWA Station - 40 Webb Hall
                                             Livingston, AL 35470

Demopolis Office: 102 E. Washington Street - Suite F
Phone: 334-287-0860 Demopolis, AL 36733

Birmingham Office: 2 20^th Street - Suite 1130
Phone: 205-254-1960 Birmingham, AL 35203

Tuscaloosa Office:               Tuscaloosa County Federal Courthouse
Phone: 205-752-5380         1118 Greensboro Avenue - Suite 336
                                             Tuscaloosa, AL

Outside of Alabama, click here for your Senator's and Representative's contact information.

Thanks to Ken for putting this information together!

DYSTONIA ADVOCACY DAY

WASHINGTON, D.C.

APRIL 17-18, 2007

The Dystonia Medical Research Foundation invites you to participate in Dystonia Advocacy Day in Washington, D.C. on Wednesday, April 18, 2007.

The goal of this day is to inform our legislators about dystonia and how it has affected our lives, and to urge them to increase federal funding for additional medical research to find the cure and more effective treatments for dystonia.

For the first time in history, all Dystonia Advocacy Coalition (DAC) organizations will participate in this day. This is a milestone for our community and will strengthen our voice and advance our issues. We will be heard!

This important annual event brings together dystonia affected individuals and families from across the U.S. for legislative activities which include: an afternoon of comprehensive advocacy training on Tuesday, April 17, a dinner with a presentation by a key member of the National Institutes of Neurological Disorders and Stroke (NINDS), a morning breakfast ceremony featuring the presentation of the Dystonia Public Policy Award, and a full day of meetings with your representatives and Senators.

We understand that some persons might be intimidated or reluctant to speak to their representatives. The training session on Tuesday will address all of your concerns. Training topics include: How to make a Hill visit, the current climate on the Hill, role playing, and so forth. Note you will be assigned to teams for Advocacy Day and a mentor will be assisting each team. Visits will be arranged in advance, and you will be given a map of your assignments, directions, and leave behind materials for each of the offices you visit. All volunteers who have participated in these events in the past have found them to be an incredibly rewarding and empowering experience and were proud to have exercised their right to communicate with elected officials.

All support groups and chapters are encouraged to send at least one representative per group. There is a strong need from advocates from the following states: WV, MS, IA, PA, MA, WY, CT, WI, CA, NY, MI, TX, NJ, GA, and LA. Limited travel funds are available for individuals in these areas.

There is a block of rooms reserved at the Beacon Hotel at 1615 Rhode Island Ave NW in Washington, D.C. The toll-free phone number is 800-821-4367 and special room rate for Dystonia Advocates is $259 plus tax. You are encouraged to make your reservations early and mention you are with the Dystonia Advocacy Group. Advocacy Day will conclude by 4 pm on Wednesday allowing most volunteers to travel home that evening.

If you will participate in Advocacy Day please contact Jennifer Molski, Director of Network Services, at jmolski@dystonia-foundation.org or by phone at 888-346-3673. If you need more information about the day please contact Public Policy Vice Chair, Todd Spotti at tspotti@att.net or phone Washington, D.C. Advocacy Day volunteer, Sally Presti at 301-627-1657.

Governor Riley today signed a proclamation making June 4 thru 11, 2006, Dystonia Awareness Week. He urged Alabamians to learn all they can about this disorder and to aid and comfort to the best of their ability those who are affected by Dystonia.

Dystonia is a neurological movement disorder characterized by severe, uncontrollable often painful muscle contractions. Dystonia is the third most common movement disorder after Parkinson's and Tremor---3 times more prevalent than muscular dystrophy or Lou Gehrig's Disease. Recent studies suggest one of the six forms of Dystonia affects 390 or every 100,000 population. It is difficult to diagnose and often mistreated as some other condition making the disorder 30 to 40 times more common than previously thought.

It an affect all ages, races and ethnic groups. The cause is unknown. There is no cure, only treatments, which include drug therapy, Botox injections, and several types of surgery. Its many forms can affect the eyes (Blepharospasm), neck (Cervical Dystonia or Spasmodic Torticollis0, limbs (Generalized Dystonia), hands (Writer's Cramp) or vocal cords (Spasmodic Dysphonia).

Linda Cannon-Mott, of Alabaster, AL, founder and leader of the Dystonia Support Group, a chapter of Dystonia Medical Research Foundation said: "We started the group 15 months ago with 6 members and now have more than 50 from 12 different Alabama counties. Our goal is to promote AWARENESS, provide OUTREACH to people who may be misdiagnosed, give SUPPORT to Dystonia patients and their families and raise funds for MEDICAL RESEARCH. This disorder is not life-threatening, but it is devastating to patients and their families and often disabling."

The group meets the third Saturday each month at 10:00 a.m. at HealthSouth/Lakeshore Rehab Hospital off Lakeshore Drive in Birmingham.

LEGISLATIVE TOOL KIT from DMRF - packed with information on how you can support Dystonia Advocacy efforts through your legislators.

Dystonia Support Group - Alabama Contact Support@Dystonia-Alabama.org

Home What is Dystonia? Newsletters Upcoming Events Join Us Brad's Page Health Care Referrals News Articles and Publications Links Contact Us		Proclamation Legislative Tool Kit Advocacy BEING AN ADVOCATE MEANS STARTING AT HOME: Motivate your family, friends, business associates, church groups, civic clubs & other groups in our advocacy efforts. I find it’s easier to do something if I’m going to ask someone else to act, too. One of the best ways to use your voice for change or action is to encourage other people to support you. Taken individually, each action may not seem like a lot, but over time, you will discover that your efforts add up to a unified voice for change or specific action on pending action, especially that affecting your health. We plead with you to use the tools at our disposal in doing grassroots ADVOCACY for issues involving health care and research to find a cause for Dystonia. Be alert to changes proposed by CMS (Medicare & Medicaid) even if you are not on those programs. Their action typically becomes a model for private insurers, HMO’s and other health-care providers to follow. ADVOCATE FOR INCREASED Natioal Institutes of Health (NIH) FUNDING FOR DYSTONIA & RELATED MOVEMENT DISORDERS. From time to time, DSG and others with whom we are associated (DMRF, NSDA, NSTA, WEMOVE, etc) will provide sample letters, emails or phone messages for you to use, but the best ADVOCACY is the message you send from your heart. CONTACTING YOUR SENATORS Congressman always maintain “local offices”. When emailing or writing a letter, it’s advisable to send it to their local office with a “copy” to their Washington, DC, office. When phoning, you’ll probably get better attention to call the local office. Senator Richard C. Shelby United States Senate 110 Hart Senate Office Bldg Washington, DC 20510-0103 DC phone: 202-224-5744 Email: http://shelby.senate.gov/resources/contact.htm Website: http://shelby.senate.gov/ Birmingham Office: Federal Building - Suite 321 Phone: 205-731-1384 1800 5^th Avenue No Birmingham, AL 35203-2171 Mobile Office: Federal Courthouse - Suite 445 Phone: 251-694-4164 113 Saint Joseph Street Mobile, AL 36602-3623 Huntsville Office: Huntsville Int’l Airport - Suite 10127 Phone: 256-772-0460 1000 Glenn Hearn Blvd Huntsville, AL 35284 Tuscaloosa Office: Federal Building, Room 240 Phone: 205-759-5047 1118 Greensboro Avenue Tuscaloosa, AL 35401-2816 Montgomery Office: Federal Courthouse, Room B-28 Phone: 334-223-7303 15 Lee Street Montgomery, AL 36104-4055 Senator Jeff Sessions United States Senate 335 Russell Senate Office Bldg Washington, DC 20510-0104 DC Phone: 202-224-4124 Email: http://sessions.senate.gov/email/contact/cfm Website: http://sessions.senate.gov/ Huntsville Office: Regions Center - Suite 802 Phone: 256-533-0979 200 Clinton Avenue N.W. Huntsville, AL 35801-4932 Birmingham Office: 341 Vance Federal Building Phone: 205-731-1500 1800 Fifth Avenue No Birmingham, AL 35203-2171 Mobile Office: 41 West I-65 Service Road Phone: 251-414-3083 Suite 2300-A Mobile, AL 36608-1291 Montgomery Office: 7550 Halcyon Summit Drive Phone: 334-244-7017 Suite 150 Montgomery, AL 36117 CONTACTING YOUR REPRESENTATIVE 1^ST District Rep. Jo Bonner 422 Cannon HOB Washington, DC 20515 Phone: 202-225-4931 Email: www.house.gov/bonner 2^nd District Rep. Terry Everett 2312 Rayburn House Office Bldg Washington, DC 20515-0102 DC Phone: 202-225-2901 Email: http://wwwc.house.gov/everett/contact/email.asp Website: http://wwwc.house/gov/everett/ Opp Office: 101 No. Main Street Phone: 334-493-9253 Opp, AL 36467 Montgomery Office: 3500 Eastern Blvd, Suite 250 Phone: 334-277-9113 Montgomery, AL 36116-1782 Dothan Office: 256 Honeysuckle Rd - Suite 15 Phone: 334-794-9680 Dothan, AL 36305 3^rd District Rep. Mike Rogers 514 Cannon House Office Building Washington, DC 20515-0103 DC Phone: 202-225-3261 Email: http://www.house.gov/mike-rogers/contact/index/shtml Website: http://www.house.gov/mike-rogers/ Montgomery Office: 7550 Halycon Summit Drive Phone: 334-277-4210 Montgomery, AL 36117 Opelika Office: 1819 Pepperell Parkway, Suite 203 Phone: 334-745-6221 Opelika, AL 36801 Anniston Office: 1129 Noble Street, Suite 104 Phone: 256-236-5655 Anniston, AL 36201 4^th District Rep. Robert B. Aderholt 1433 Longworth House Office Building Washington, DC 20515-0104 DC Phone: 20o2-225-4876 Email: http://aderholt.house.gov/IQ_email.shtml Website: http://aderholt.house.gov/ Cullman Office: 205 Fourth Ave NE - Suite 104 Phone: 256-734-6043 Cullman, AL 35055 Jasper Office: Carl Elliott Federal Bldg - Suite 247 Phone: 205-221-2310 1710 Alabama Avenue Jasper, AL 35501-5400 Gadsden Office: Federal Building - Suite 107 Phone: 256-546-0201 600 Broad Street Gadsden, AL 35901-3745 5^th District Rep. Robert E. (Bud) Cramer 2368 Rayburn House Office Building Washington, DC 20515-0105 DC Phone: 202-225-4801 Email: http://cramer.house.gov/NR/exeres/3AFBDAAF-1015-4C72-95FC-474743BC67C2.htm WebSite: http://cramer.house.gov/NR/exeres/EF138332-33B5-4F6D-A432-76DFA33AC27C.htm Tuscumbia Office: 1011 George Wallace Blvd Phone: 256-381-3450 Tuscumbia, AL 35674 Decatur Office: Morgan County Courthouse Phone: 256-355-9406 302 Lee Street Decatur, AL 35602 Huntsville Office: 626 Clinton Avenue West Phone: 256-551-0190 Huntsville, AL 35801-4210 6^th District Rep. Spencer Bachus 442 Cannon House Office Building Washington, DC 20515-0106 DC Phone: 202-225-4921 Email: http://www.house.gov/writerep/ Website: http://bachus.house.gov/NR/exeres/537B8A60-5856-4086-9AC1-FED8E20C1245.htm Birmingham Office: 1900 Int’l Park Drive - Suite 107 Phone: 205-969-2296 Birmingham, AL 35243 Clanton Office: 703 2^nd Avenue No or PO Box 502 Phone: 205-280-0704 Clanton, AL 35046 7^th District: Rep. Arthur Davis 208 Cannon House Office Bldg Washington, DC 20515-0107 DC Phone: 202-225-2665 Email: http://www.house.gov/arthurdavis/zipauth.html Website: http://www.house.gov/arthurdavis/ Selma Office: 908 Alabama Avenue Phone: 334-877-4414 Selma, AL 36701 Livington Office: 205 N. Washington Street Phone: 205-652-5834 UWA Station - 40 Webb Hall Livingston, AL 35470 Demopolis Office: 102 E. Washington Street - Suite F Phone: 334-287-0860 Demopolis, AL 36733 Birmingham Office: 2 20^th Street - Suite 1130 Phone: 205-254-1960 Birmingham, AL 35203 Tuscaloosa Office: Tuscaloosa County Federal Courthouse Phone: 205-752-5380 1118 Greensboro Avenue - Suite 336 Tuscaloosa, AL Outside of Alabama, click here for your Senator's and Representative's contact information. Thanks to Ken for putting this information together! DYSTONIA ADVOCACY DAY WASHINGTON, D.C. APRIL 17-18, 2007 The Dystonia Medical Research Foundation invites you to participate in Dystonia Advocacy Day in Washington, D.C. on Wednesday, April 18, 2007. The goal of this day is to inform our legislators about dystonia and how it has affected our lives, and to urge them to increase federal funding for additional medical research to find the cure and more effective treatments for dystonia. For the first time in history, all Dystonia Advocacy Coalition (DAC) organizations will participate in this day. This is a milestone for our community and will strengthen our voice and advance our issues. We will be heard! This important annual event brings together dystonia affected individuals and families from across the U.S. for legislative activities which include: an afternoon of comprehensive advocacy training on Tuesday, April 17, a dinner with a presentation by a key member of the National Institutes of Neurological Disorders and Stroke (NINDS), a morning breakfast ceremony featuring the presentation of the Dystonia Public Policy Award, and a full day of meetings with your representatives and Senators. We understand that some persons might be intimidated or reluctant to speak to their representatives. The training session on Tuesday will address all of your concerns. Training topics include: How to make a Hill visit, the current climate on the Hill, role playing, and so forth. Note you will be assigned to teams for Advocacy Day and a mentor will be assisting each team. Visits will be arranged in advance, and you will be given a map of your assignments, directions, and leave behind materials for each of the offices you visit. All volunteers who have participated in these events in the past have found them to be an incredibly rewarding and empowering experience and were proud to have exercised their right to communicate with elected officials. All support groups and chapters are encouraged to send at least one representative per group. There is a strong need from advocates from the following states: WV, MS, IA, PA, MA, WY, CT, WI, CA, NY, MI, TX, NJ, GA, and LA. Limited travel funds are available for individuals in these areas. There is a block of rooms reserved at the Beacon Hotel at 1615 Rhode Island Ave NW in Washington, D.C. The toll-free phone number is 800-821-4367 and special room rate for Dystonia Advocates is $259 plus tax. You are encouraged to make your reservations early and mention you are with the Dystonia Advocacy Group. Advocacy Day will conclude by 4 pm on Wednesday allowing most volunteers to travel home that evening. If you will participate in Advocacy Day please contact Jennifer Molski, Director of Network Services, at jmolski@dystonia-foundation.org or by phone at 888-346-3673. If you need more information about the day please contact Public Policy Vice Chair, Todd Spotti at tspotti@att.net or phone Washington, D.C. Advocacy Day volunteer, Sally Presti at 301-627-1657. PROCLAMATION OF DYSTONIA AWARENESS WEEK Governor Riley Proclaims Dystonia Awareness Week Montgomery - June 1, 2006 Governor Riley today signed a proclamation making June 4 thru 11, 2006, Dystonia Awareness Week. He urged Alabamians to learn all they can about this disorder and to aid and comfort to the best of their ability those who are affected by Dystonia. Dystonia is a neurological movement disorder characterized by severe, uncontrollable often painful muscle contractions. Dystonia is the third most common movement disorder after Parkinson's and Tremor---3 times more prevalent than muscular dystrophy or Lou Gehrig's Disease. Recent studies suggest one of the six forms of Dystonia affects 390 or every 100,000 population. It is difficult to diagnose and often mistreated as some other condition making the disorder 30 to 40 times more common than previously thought. It an affect all ages, races and ethnic groups. The cause is unknown. There is no cure, only treatments, which include drug therapy, Botox injections, and several types of surgery. Its many forms can affect the eyes (Blepharospasm), neck (Cervical Dystonia or Spasmodic Torticollis0, limbs (Generalized Dystonia), hands (Writer's Cramp) or vocal cords (Spasmodic Dysphonia). Linda Cannon-Mott, of Alabaster, AL, founder and leader of the Dystonia Support Group, a chapter of Dystonia Medical Research Foundation said: "We started the group 15 months ago with 6 members and now have more than 50 from 12 different Alabama counties. Our goal is to promote AWARENESS, provide OUTREACH to people who may be misdiagnosed, give SUPPORT to Dystonia patients and their families and raise funds for MEDICAL RESEARCH. This disorder is not life-threatening, but it is devastating to patients and their families and often disabling." The group meets the third Saturday each month at 10:00 a.m. at HealthSouth/Lakeshore Rehab Hospital off Lakeshore Drive in Birmingham. LEGISLATIVE TOOL KIT from DMRF - packed with information on how you can support Dystonia Advocacy efforts through your legislators.