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MS

MOVING TOWARD A WORLD FREE OF MS Spring 2009

Arizona Chapter

Arizona Chapter Annual Meeting Wrap Up Thank you to everyone who attended our Annual Meeting this past January. It was a wonderful celebration of everyone who has made an impact in the fight against MS. As 2008 is behind us, the Arizona Chapter looks forward to 2009 and exciting steps into the future. Congratulations to all of our award recipients. Thank you for all of your hard work and dedication.

Self Help Group Leader of the Year Thais Morgan - Flagstaff

Special Group Leader of the Year Darrin and Angie Ramage

Health Professional of the Year Dr. Barry Hendin

Rookie Volunteer of the Year Amber Huntley

Volunteer of the Year Sue Kelly

Advocacy Award

Sieg and Karen Wenzel

Corporate Partner Award

INSIDE THIS ISSUE:

New Belgium Brewing Company

Planning Wise Page 4

MSConnectionspring.indd 1

Advocacy Page 8

Mission Partner Award American Express Circle K

Champion Award Allen Hurt Christina McMaster

Top Fundraiser Phoenix Walk

Mixed Nutz $16,950 (Team) Beth Hennessy $ 13,918 (Individual)

Top Fundraiser Tucson Walk

Carolyne’s Sole Mates $12,704 (Team) Sandy Stein $9,981 (Individual

Top Fundraiser bike MS Discount Tire $43,996

Buddy Pylant bike MS Top Fundraiser Award Bob Hobbs Jr. $23,000

walk MS Page 10

Research Page 15 3/18/2009 10:26:42 AM


A Message from the President

The MS CONNECTION is a publication of the National Multiple Sclerosis Society, Arizona Chapter and is published 4 times a year.

Phoenix Office It seems there are few ‘down’ times here at the Arizona Chapter, but I must say late-winter/early-spring is among the busiest. So much is happening in every corner of our business. Our development staff is preparing for another bike MS Round-Up Ride the last weekend in March—our largest and most demanding special event. Our programs and services staff is carrying on our many fine programs for clients as well as planning our second annual conference for health professionals who treat patients with MS. The chapter marketing and communications is giving more information to more people through more avenues—email, print and media. Our advocacy staff is involved in our public policy conference and a day at the capital to meet and connect with lawmakers on behalf of many issues affecting people living with MS and their families. Our administrative folks are toiling over finances and preparing for the difficult job of budgeting in a very uncertain time in our country.

2

JOIN THE MOVEMENT: nationalMSsociety.org

MSConnectionspring.indd 2-3

We are committed to continue to meet the many needs of our clients and their families. You can help. Please do whatever you can. Contribute time. Contribute dollars. Contribute your voice. Contribute your story.

5025 E. Washington St. Suite 102 Phoenix, AZ 85034

Tucson Office 4400 E. Broadway Suite 600 Tucson, AZ 85711

Nationwide MS Hotline: Move others…

1-800-344-4867

Email: info@aza.nmss.org Arizona Chapter Website: http://aza,nationalMSsociety.org

Sheryl Keeme

NMSS website: http://nationalMSsocitey.org

CHAPTER NEWS

CHAPTER NEWS

MS

Arizona Chapter Board Chair: Judy Egan President: Sheryl Keeme Director of Finance & Administration: Sherry Ladd Vice President, Programs & Services: Philip Carll, MSW Development Director: Brandee Wessel Office Manager: Jacqueline Valencia Comm. Marketing Manager: Ashley Moody Care Manager: Linda Jakpor, MSW

The National Multiple Sclerosis Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The National MS Society assumes no liability for the use of contents of any product or service mentioned. Information provided by the Society is based upon professional advice, published experience and expert opinion.

Development Manager: Carol Czerniski

Information provided in response to questions does not constitute therapeutic recommendations or prescriptions. The National MS Society recommends that all questions and information be discussed with a personal physician. The National MS Society is dedicated to ending the devastating effects of MS.

Finance Coordinator: Deborah Clatone

Development Manager: Sarah Meeks Development Manager (Tucson): Erin Joseph Program Coordinator: Elizabeth McNamara Advocacy Coordinator: Siobhan McCurdy

Database Coordinator: Carl Manglona Administrative Assistant: JoLee Levy

TOLL FREE NUMBER 1 800 344 4867

3

3/18/2009 10:26:42 AM


A Message from the President

The MS CONNECTION is a publication of the National Multiple Sclerosis Society, Arizona Chapter and is published 4 times a year.

Phoenix Office It seems there are few ‘down’ times here at the Arizona Chapter, but I must say late-winter/early-spring is among the busiest. So much is happening in every corner of our business. Our development staff is preparing for another bike MS Round-Up Ride the last weekend in March—our largest and most demanding special event. Our programs and services staff is carrying on our many fine programs for clients as well as planning our second annual conference for health professionals who treat patients with MS. The chapter marketing and communications is giving more information to more people through more avenues—email, print and media. Our advocacy staff is involved in our public policy conference and a day at the capital to meet and connect with lawmakers on behalf of many issues affecting people living with MS and their families. Our administrative folks are toiling over finances and preparing for the difficult job of budgeting in a very uncertain time in our country.

2

JOIN THE MOVEMENT: nationalMSsociety.org

MSConnectionspring.indd 2-3

We are committed to continue to meet the many needs of our clients and their families. You can help. Please do whatever you can. Contribute time. Contribute dollars. Contribute your voice. Contribute your story.

5025 E. Washington St. Suite 102 Phoenix, AZ 85034

Tucson Office 4400 E. Broadway Suite 600 Tucson, AZ 85711

Nationwide MS Hotline: Move others…

1-800-344-4867

Email: info@aza.nmss.org Arizona Chapter Website: http://aza,nationalMSsociety.org

Sheryl Keeme

NMSS website: http://nationalMSsocitey.org

CHAPTER NEWS

CHAPTER NEWS

MS

Arizona Chapter Board Chair: Judy Egan President: Sheryl Keeme Director of Finance & Administration: Sherry Ladd Vice President, Programs & Services: Philip Carll, MSW Development Director: Brandee Wessel Office Manager: Jacqueline Valencia Comm. Marketing Manager: Ashley Moody Care Manager: Linda Jakpor, MSW

The National Multiple Sclerosis Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The National MS Society assumes no liability for the use of contents of any product or service mentioned. Information provided by the Society is based upon professional advice, published experience and expert opinion.

Development Manager: Carol Czerniski

Information provided in response to questions does not constitute therapeutic recommendations or prescriptions. The National MS Society recommends that all questions and information be discussed with a personal physician. The National MS Society is dedicated to ending the devastating effects of MS.

Finance Coordinator: Deborah Clatone

Development Manager: Sarah Meeks Development Manager (Tucson): Erin Joseph Program Coordinator: Elizabeth McNamara Advocacy Coordinator: Siobhan McCurdy

Database Coordinator: Carl Manglona Administrative Assistant: JoLee Levy

TOLL FREE NUMBER 1 800 344 4867

3

3/18/2009 10:26:42 AM


CHAPTER NEWS

Upcoming Events

MS

bike MS is just around the corner!

What is Planning Wise?

Who Qualifies for Planning Wise?

Planning Wise is a dynamic new career and financial program offered by the National Multiple Sclerosis Society, Arizona Chapter that helps people living with MS evaluate and plan their career path and financial future.

The program is open to persons living with MS who: » Have recently lost employment » Are at risk for losing employment » Are considering a career change

How Does it Work?

Space for this free program is limited. For more information and enrollment, contact:

For more information or to register, visit:

Linda Jakpor, MSW Care Manager 480-968-2488 x223 ljakpor@aza.nmss.org

The Planning Wise program provides a 90-day one-to-one consultation that offers career and job coaching, financial planning and insurance benefit counseling.

More questions?

Sponsorship Display

CHAPTER NEWS

The MS Society Arizona Chapter Introduces Planning Wise Building Security, Independence and Life Balance

23rd Annual Bike MS: Round Up Ride 2009 March 28 & 29, 2009 Heritage Park in Florence, Arizona The Round Up Ride features 35, 45, 75, 100 and 150 mile options through scenic Florence, Coolidge and Casa Grande.

http://bikeaza.nationalMSsociety.org

We are still looking for bike MS volunteers!

It takes over 300 volunteers to make the bike MS Round Up Ride successful. Volunteering alone or with a group is an excellent way to JOIN THE MOVEMENT. For more information and to learn about bike MS Volunteer opportunities before, during and after the event visit: http://aza.nationalMSsociety.org or call 480-968-2488, then press 0

4th Annual Women Against MS (WAMS) Luncheon Join us for WAMS, an afternoon of inspiration, motivation and empowerment as we move towards a world free of MS. Wednesday, April 29, 2009 11:00 a.m. - 1:00 p.m. InterContinental Montelucia Resort & Spa Guest Speaker, Martha Madison, formerly of NBC’s Days of our Lives will speak about seeing the devastating effects of MS first hand and caregiving for her mother through her battle with MS. Ticket Cost: $75

To register visit: http://aza.nationalMSsociety.org or call 480-968-2488, then press 0 4

JOIN THE MOVEMENT: nationalMSsociety.org

MSConnectionspring.indd 4-5

TOLL FREE NUMBER 1 800 344 4867

5

3/18/2009 10:26:44 AM


CHAPTER NEWS

Upcoming Events

MS

bike MS is just around the corner!

What is Planning Wise?

Who Qualifies for Planning Wise?

Planning Wise is a dynamic new career and financial program offered by the National Multiple Sclerosis Society, Arizona Chapter that helps people living with MS evaluate and plan their career path and financial future.

The program is open to persons living with MS who: » Have recently lost employment » Are at risk for losing employment » Are considering a career change

How Does it Work?

Space for this free program is limited. For more information and enrollment, contact:

For more information or to register, visit:

Linda Jakpor, MSW Care Manager 480-968-2488 x223 ljakpor@aza.nmss.org

The Planning Wise program provides a 90-day one-to-one consultation that offers career and job coaching, financial planning and insurance benefit counseling.

More questions?

Sponsorship Display

CHAPTER NEWS

The MS Society Arizona Chapter Introduces Planning Wise Building Security, Independence and Life Balance

23rd Annual Bike MS: Round Up Ride 2009 March 28 & 29, 2009 Heritage Park in Florence, Arizona The Round Up Ride features 35, 45, 75, 100 and 150 mile options through scenic Florence, Coolidge and Casa Grande.

http://bikeaza.nationalMSsociety.org

We are still looking for bike MS volunteers!

It takes over 300 volunteers to make the bike MS Round Up Ride successful. Volunteering alone or with a group is an excellent way to JOIN THE MOVEMENT. For more information and to learn about bike MS Volunteer opportunities before, during and after the event visit: http://aza.nationalMSsociety.org or call 480-968-2488, then press 0

4th Annual Women Against MS (WAMS) Luncheon Join us for WAMS, an afternoon of inspiration, motivation and empowerment as we move towards a world free of MS. Wednesday, April 29, 2009 11:00 a.m. - 1:00 p.m. InterContinental Montelucia Resort & Spa Guest Speaker, Martha Madison, formerly of NBC’s Days of our Lives will speak about seeing the devastating effects of MS first hand and caregiving for her mother through her battle with MS. Ticket Cost: $75

To register visit: http://aza.nationalMSsociety.org or call 480-968-2488, then press 0 4

JOIN THE MOVEMENT: nationalMSsociety.org

MSConnectionspring.indd 4-5

TOLL FREE NUMBER 1 800 344 4867

5

3/18/2009 10:26:44 AM


MS CHAPTER NEWS

CHAPTER NEWS

Sponsorship Display

Upcoming Programs Yoga - Flagstaff March 19 - April 23 10:45 a.m. - 11:45 a.m. Thorpe Park Center 245 N. Thorpe Rd. Flagstaff, AZ Cost: $10 for all 6 sessions

April 18 9:00 a.m. - 11:00 a.m. Hampton Inn 3453 Ranch Dr. Prescott, AZ 85034

Medication Assistance

April 21 5:00 p.m. - 7:00 p.m. El Palacio - Mexican Restaurant 1885 Hwy. 95 Bullhead City, AZ 86442

March 26 6:00 p.m. - 9:00 p.m. Disability Empowerment Center 5025 E. Washington St. Phoenix, AZ 85034

Pilates - Sun City

Navigator Nook The Care Management Program enables people living with MS to stay connected to the world and move their lives forward. The National MS Society, Arizona Chapter developed the Care Management Program to address the challenges of people living with multiple sclerosis. The goal of the Care Management Program is to promote enhanced quality of life and to help people living with MS achieve the highest level of independence and autonomy. The services provided by the Care Manager vary depending on each individual’s goal, but may include: individual care management, advocacy, navigation of community services, disease education, referral and emotional support. For more information on our Care Management Program or to enroll, contact:

6

JOIN THE MOVEMENT: nationalMSsociety.org

MSConnectionspring.indd 6-7

Linda Jakpor, MSW Care Manager 480-968-2488 x223 ljakpor@aza.nmss.org

Research Update

April 2 - May 7 10:30 a.m. - 11:30 a.m. Care from the Heart 10032 W. Bell Road Suite 106 Sun City, AZ 85351 Cost: $10 for all 6 sessions

Boys Night Out

April 14 6:00 p.m. - 9:00 p.m. Disability Empowerment Center 5025 E. Washington St. Phoenix, AZ 85034 For more information or to register for any of these programs visit: http://aza.nationalMSsociety.org or call 480-968-2488, then press 0

Citizen Advocacy

Occupational Therapy & MS April 22 5:00 p.m. - 7:00 p.m. Holiday Inn Yuma 1901 E. 18th St. Yuma, AZ 85365

No Boys Allowed May 14 6:00 p.m. - 8:00 p.m. Disability Empowerment Center 5025 E. Washington St. Phoenix, AZ 85034

Camp Hope July 8 - July 11 Camp Wamatochik 5101 S. Senator Hwy. Prescott, AZ 86303 Cost: $40 per camper

TOLL FREE NUMBER 1 800 344 4867

7

3/18/2009 10:26:44 AM


MS CHAPTER NEWS

CHAPTER NEWS

Sponsorship Display

Upcoming Programs Yoga - Flagstaff March 19 - April 23 10:45 a.m. - 11:45 a.m. Thorpe Park Center 245 N. Thorpe Rd. Flagstaff, AZ Cost: $10 for all 6 sessions

April 18 9:00 a.m. - 11:00 a.m. Hampton Inn 3453 Ranch Dr. Prescott, AZ 85034

Medication Assistance

April 21 5:00 p.m. - 7:00 p.m. El Palacio - Mexican Restaurant 1885 Hwy. 95 Bullhead City, AZ 86442

March 26 6:00 p.m. - 9:00 p.m. Disability Empowerment Center 5025 E. Washington St. Phoenix, AZ 85034

Pilates - Sun City

Navigator Nook The Care Management Program enables people living with MS to stay connected to the world and move their lives forward. The National MS Society, Arizona Chapter developed the Care Management Program to address the challenges of people living with multiple sclerosis. The goal of the Care Management Program is to promote enhanced quality of life and to help people living with MS achieve the highest level of independence and autonomy. The services provided by the Care Manager vary depending on each individual’s goal, but may include: individual care management, advocacy, navigation of community services, disease education, referral and emotional support. For more information on our Care Management Program or to enroll, contact:

6

JOIN THE MOVEMENT: nationalMSsociety.org

MSConnectionspring.indd 6-7

Linda Jakpor, MSW Care Manager 480-968-2488 x223 ljakpor@aza.nmss.org

Research Update

April 2 - May 7 10:30 a.m. - 11:30 a.m. Care from the Heart 10032 W. Bell Road Suite 106 Sun City, AZ 85351 Cost: $10 for all 6 sessions

Boys Night Out

April 14 6:00 p.m. - 9:00 p.m. Disability Empowerment Center 5025 E. Washington St. Phoenix, AZ 85034 For more information or to register for any of these programs visit: http://aza.nationalMSsociety.org or call 480-968-2488, then press 0

Citizen Advocacy

Occupational Therapy & MS April 22 5:00 p.m. - 7:00 p.m. Holiday Inn Yuma 1901 E. 18th St. Yuma, AZ 85365

No Boys Allowed May 14 6:00 p.m. - 8:00 p.m. Disability Empowerment Center 5025 E. Washington St. Phoenix, AZ 85034

Camp Hope July 8 - July 11 Camp Wamatochik 5101 S. Senator Hwy. Prescott, AZ 86303 Cost: $40 per camper

TOLL FREE NUMBER 1 800 344 4867

7

3/18/2009 10:26:44 AM


MS CHAPTER NEWS

In recognition of achievements in advocacy, education and professional education, The National MS Society, Arizona Chapter has been awarded the 2008 Cavallo Award. Of the 54 chapters of the National MS Society, the Arizona Chapter was one of only 15 who received this award. The Arizona Chapter was recognized for holding 63 programs for individuals with MS or who are affected by MS in Arizona. Also recognized were the Arizona Chapter’s Advocacy Program and MS 2008: Maximizing Care Strategies, the Arizona Chapter’s first multi-disciplinary continuing medical education conference. The Arizona Chapter is moving forward from this success with continued growth in programs and advocacy and our 2nd annual continuing medical education conference, MS 2009: Maximizing Care Strategies on May 9, 2009.

Self Help Groups The National Multiple Sclerosis Society Arizona Chapter has a wonderful network of Self Help Groups. To find out more about what is available in your area, or to start your own self help group, contact:

CHAPTER NEWS

The Arizona Chapter has been awarded the 2008 National Cavallo Award

Elizabeth McNamara Program Coordinator 480-968-2488 x228 emcnamara@aza.nmss.org

Sponsorship Display

8

JOIN THE MOVEMENT: nationalMSsociety.org

MSConnectionspring.indd 8-9

TOLL FREE NUMBER 1 800 344 4867

9

3/18/2009 10:26:45 AM


MS CHAPTER NEWS

In recognition of achievements in advocacy, education and professional education, The National MS Society, Arizona Chapter has been awarded the 2008 Cavallo Award. Of the 54 chapters of the National MS Society, the Arizona Chapter was one of only 15 who received this award. The Arizona Chapter was recognized for holding 63 programs for individuals with MS or who are affected by MS in Arizona. Also recognized were the Arizona Chapter’s Advocacy Program and MS 2008: Maximizing Care Strategies, the Arizona Chapter’s first multi-disciplinary continuing medical education conference. The Arizona Chapter is moving forward from this success with continued growth in programs and advocacy and our 2nd annual continuing medical education conference, MS 2009: Maximizing Care Strategies on May 9, 2009.

Self Help Groups The National Multiple Sclerosis Society Arizona Chapter has a wonderful network of Self Help Groups. To find out more about what is available in your area, or to start your own self help group, contact:

CHAPTER NEWS

The Arizona Chapter has been awarded the 2008 National Cavallo Award

Elizabeth McNamara Program Coordinator 480-968-2488 x228 emcnamara@aza.nmss.org

Sponsorship Display

8

JOIN THE MOVEMENT: nationalMSsociety.org

MSConnectionspring.indd 8-9

TOLL FREE NUMBER 1 800 344 4867

9

3/18/2009 10:26:45 AM


CHAPTER NEWS

We walked on the wild side in Phoenix. We walked on the wild side for the first time in Prescott. And now, our walk season has finally drawn to a close with the 16th Annual walk MS: Tucson Walk on the Wild Side. The 1st walk MS: Prescott Walk on the Wild Side had 270 walkers, 39 teams and raised $24, 645! The 21st annual walk MS: Phoenix Walk on the Wild Side had 3,707 walkers, 287 teams and raised $357,473.97! The 16th annual walk MS: Tucson Walk on the Wild Side had 724 walkers, 57 teams and raised $62,920.11! Thanks to everyone who participated in these events as walkers and volunteers. Without your dedication to moving towards a world free of multiple sclerosis, these events wouldn’t have been possible. The money raised through our walk events continue to fund important Arizona Chapter programs, services, advocacy efforts and fund MS research initiatives. 10 JOIN THE MOVEMENT: nationalMSsociety.org

MSConnectionspring.indd 10-11

Mark Your Calendars ! As this walk season is ending, next years walk season is getting ready to begin. We’re excited to announce our dates for the Prescott and Phoenix walks coming up this fall! The 2nd annual walk MS: Prescott Walk on the Wild Side will be held on : Saturday, October 17, 2009 The 22nd annual walk MS: Phoenix Walk on the Wild Side will be held on: Saturday, November 7, 2009 Stay tuned for details and registration information for these as well as our other upcoming events:

MS Awareness Night with the Phoenix Coyotes April 11, 2009 - 5:00 p.m. Jobing.com Arena Join the Phoenix Coyotes, the National MS Society - Arizona Chapter and those living with MS for the season finale game vs. division rival Anaheim Ducks.

Corks and Chords 2009 September 12, 2009 6:30 p.m. - 9:00 p.m. Mayo Clinic Join the Arizona Chapter for our 3rd Annual Corks and Chords, an evening of wine and music to end MS.

Last fall, nearly 100 Societysponsored young research fellows met in Chicago to share information, generate new ideas, and strengthen their commitment to MS research.

Moving to the next level

Held in conjunction with the Society’s National Conference, the Tykeson Conference offered young scientists a chance to meet people who live with MS every day.

NEWLY DIAGNOSED

walk MS Updates and New Dates Announced

MS Historic conference motivates new MS researchers

The Tykeson Fellows “You can read about MS in Conference featured talks medical papers,” said fellow by 21 fellows, in addition to Jennifer Kanter, PhD (Harvard presentations from more University, Boston), “but what The conference was seasoned investigators, sponsored by a generous you learn from talking to including a keynote address by contribution from Donald someone with the disease is so Stanford University’s Lawrence Tykeson, Honorary Life much more real.” She knows this Director of the Society’s personally because her father Steinman, MD. National Board of had MS. Directors, with additional Presenters analyzed what is support from Avanir known about the development Dr. Kanter does the 50-mile Pharmaceuticals, Biogen of MS—and the roles played Challenge Walk MS with her Idec, Genentech, and the by genes and the immune mother and sister. At the Society’s Wisconsin system. Fellows discussed their National Conference she Chapter. work on strategies to stop MS encouraged her colleagues immune attacks, including: to participate in the Society’s WalkMS and BikeMS events. “If you want to feel the ∫ Yueting Zhang, PhD (Mount Sinai School happiness that you get when an experiment of Medicine), who presented findings from goes well, go to a Society event—you’ll feel a team led by her mentor Gareth John, it every time!” VetMB, PhD, on an immune messenger protein called interleukin-11 that Moving forward promotes the survival and maturation of “This first-ever Tykeson Fellows Conference myelin-making cells. was a resounding success,” said Patricia O’Looney, PhD, vice president of Biomedical ∫ Philip L. De Jager, MD, PhD (Brigham & Research at the Society, who is already Women’s Hospital), who reported on his planning the next meeting. team’s finding that CD58, a possible MS susceptibility gene, appears to contain genetic variations that affect inflammation and nerve degeneration separately, suggesting that they might be two different genetic processes.

The second Tykeson Fellows Conference will be held in 2010 in conjunction with the joint annual meeting of the Consortium of MS Centers and ACTRIMS (Americas Committee for Treatment and Research in MS). TOLL FREE NUMBER 1 800 344 4867 11 3/18/2009 10:26:46 AM


CHAPTER NEWS

We walked on the wild side in Phoenix. We walked on the wild side for the first time in Prescott. And now, our walk season has finally drawn to a close with the 16th Annual walk MS: Tucson Walk on the Wild Side. The 1st walk MS: Prescott Walk on the Wild Side had 270 walkers, 39 teams and raised $24, 645! The 21st annual walk MS: Phoenix Walk on the Wild Side had 3,707 walkers, 287 teams and raised $357,473.97! The 16th annual walk MS: Tucson Walk on the Wild Side had 724 walkers, 57 teams and raised $62,920.11! Thanks to everyone who participated in these events as walkers and volunteers. Without your dedication to moving towards a world free of multiple sclerosis, these events wouldn’t have been possible. The money raised through our walk events continue to fund important Arizona Chapter programs, services, advocacy efforts and fund MS research initiatives. 10 JOIN THE MOVEMENT: nationalMSsociety.org

MSConnectionspring.indd 10-11

Mark Your Calendars ! As this walk season is ending, next years walk season is getting ready to begin. We’re excited to announce our dates for the Prescott and Phoenix walks coming up this fall! The 2nd annual walk MS: Prescott Walk on the Wild Side will be held on : Saturday, October 17, 2009 The 22nd annual walk MS: Phoenix Walk on the Wild Side will be held on: Saturday, November 7, 2009 Stay tuned for details and registration information for these as well as our other upcoming events:

MS Awareness Night with the Phoenix Coyotes April 11, 2009 - 5:00 p.m. Jobing.com Arena Join the Phoenix Coyotes, the National MS Society - Arizona Chapter and those living with MS for the season finale game vs. division rival Anaheim Ducks.

Corks and Chords 2009 September 12, 2009 6:30 p.m. - 9:00 p.m. Mayo Clinic Join the Arizona Chapter for our 3rd Annual Corks and Chords, an evening of wine and music to end MS.

Last fall, nearly 100 Societysponsored young research fellows met in Chicago to share information, generate new ideas, and strengthen their commitment to MS research.

Moving to the next level

Held in conjunction with the Society’s National Conference, the Tykeson Conference offered young scientists a chance to meet people who live with MS every day.

NEWLY DIAGNOSED

walk MS Updates and New Dates Announced

MS Historic conference motivates new MS researchers

The Tykeson Fellows “You can read about MS in Conference featured talks medical papers,” said fellow by 21 fellows, in addition to Jennifer Kanter, PhD (Harvard presentations from more University, Boston), “but what The conference was seasoned investigators, sponsored by a generous you learn from talking to including a keynote address by contribution from Donald someone with the disease is so Stanford University’s Lawrence Tykeson, Honorary Life much more real.” She knows this Director of the Society’s personally because her father Steinman, MD. National Board of had MS. Directors, with additional Presenters analyzed what is support from Avanir known about the development Dr. Kanter does the 50-mile Pharmaceuticals, Biogen of MS—and the roles played Challenge Walk MS with her Idec, Genentech, and the by genes and the immune mother and sister. At the Society’s Wisconsin system. Fellows discussed their National Conference she Chapter. work on strategies to stop MS encouraged her colleagues immune attacks, including: to participate in the Society’s WalkMS and BikeMS events. “If you want to feel the ∫ Yueting Zhang, PhD (Mount Sinai School happiness that you get when an experiment of Medicine), who presented findings from goes well, go to a Society event—you’ll feel a team led by her mentor Gareth John, it every time!” VetMB, PhD, on an immune messenger protein called interleukin-11 that Moving forward promotes the survival and maturation of “This first-ever Tykeson Fellows Conference myelin-making cells. was a resounding success,” said Patricia O’Looney, PhD, vice president of Biomedical ∫ Philip L. De Jager, MD, PhD (Brigham & Research at the Society, who is already Women’s Hospital), who reported on his planning the next meeting. team’s finding that CD58, a possible MS susceptibility gene, appears to contain genetic variations that affect inflammation and nerve degeneration separately, suggesting that they might be two different genetic processes.

The second Tykeson Fellows Conference will be held in 2010 in conjunction with the joint annual meeting of the Consortium of MS Centers and ACTRIMS (Americas Committee for Treatment and Research in MS). TOLL FREE NUMBER 1 800 344 4867 11 3/18/2009 10:26:46 AM


NEWLY NEWLYDIAGNOSED DIAGNOSED

On the Web or face-to-face, find people who’ll help you take charge of your MS. Meet three people who’ve done it.

Reaching out

“Some people don’t want to tell their friends,” James Sagen, 22, who lives in Washington, told MS Connection. “But I told mine, and their laughter and humor helped me get through the months after diagnosis. Then I began a live blog. By chance, one girl replied that she had MS, too. Now she’s one of my best friends.”

my church for support,” the 20-year-old said. Tiffany, a dancer, attends Chicago’s Trinity United Church, where she learned “praise dancing” —ballet dancing to gospel songs. Now as an MS Ambassador, she performs praise dancing at Society events to spread the word.

Take a step

If you’d like to increase your support network, Real Talk. Real Answers. Living with MS in Your 20s and 30s, sponsored by the Society and MS LifeLines can help. This online program provides young adults with an opportunity for candid and frank discussion and offers answers to some of the questions that they have about living with MS. Visit RealTalkRealAnswers.com.

Just recently, James’ Society chapter started luncheons for young people. “Meeting more young people with MS opened my eyes,” James said. “It made me see you can live with MS comfortably.” Tara Lane was diagnosed in 2000 when she was getting married in Vail, Colo. “I participated in Bike MS, and Walk MS events,” said Tara, 37, who teaches figure skating. “That gave me the idea for an MS Skate-a-Thon. When I met another woman in the skating community who had MS, we started our own group, reaching out to more people. The greater my network is, the better educated I become.” When Tiffany Jones went off to college, she decided not to disclose her MS on campus. “I have my family, the Society and members of 12 JOIN THE MOVEMENT: nationalMSsociety.org MSConnectionspring.indd 12-13

Smart tax prep for people with MS

MONEY MONEYMATTERS MATTERS

Getting the support you need

MS

by Martha King

Deductions, exclusions and credits that may apply to YOU Taxes pay for many things we all need. But that doesn’t mean any of us should pay a penny more than the law requires. IRS Publication 907, Tax Highlights for Persons with Disabilities has important details for you or your tax preparer. It’s downloadable at www.irs.gov or telephone 1-800-829-3676. ∫ Gross Income: Supplemental Security

Income (SSI) and certain veterans (VA) disability benefits are excluded from your gross income. However, Social Security Administration payments may be taxed, and income from disability insurance that was paid for by your employer (or former employer) is taxable. See IRS publication 525.

∫ Impairment-Related Work Expenses: If

a physical or mental disability limits your ability to function as an employee, you may be able to deduct work expenses related to that impairment. Examples: wages for an on-the-job personal care attendant, or the cost of a text-to-speech computer program. See IRS publication 907 for details.

∫ Medical Deductibles: You may deduct

your medical and dental expenses for the year to the extent that they exceed 7½% of your adjusted gross income, with a few exceptions. You may count the cost of home improvements or equipment to alleviate your physical or mental condition as medical expenses. Examples include

installation of ramps or air conditioning, the amounts paid to purchase, train and maintain a service animal, and more. See IRS publication 502. ∫ Dependent Care Credit: If you pay

someone to care for a dependent person so that you can work or look for work, you may claim a credit for those expenses. The dependent can be your spouse or another adult who lives with you, even if that person has some income, as long as he/ she is physically or mentally unable to be left alone. See IRS publication 503.

∫ The Earned Income Credit (EIC): You

may be due a cash payment if you worked in 2008 for a low annual wage — up to $12,590 for a single person with no dependents and up to $39,783 for a married couple, filing jointly, who have more than one dependent child. To get the check, you have to apply. See Publication 596.

∫ Credit for the Elderly and Disabled: Low-

income individuals with taxable disability income may qualify for a tax credit. See Publication 524.

Start planning now. Get free help from the IRS at 1-800-829-1040. Call early, not on April 14th! TOLL FREE NUMBER 1 800 344 4867 13 3/18/2009 10:26:51 AM


NEWLY NEWLYDIAGNOSED DIAGNOSED

On the Web or face-to-face, find people who’ll help you take charge of your MS. Meet three people who’ve done it.

Reaching out

“Some people don’t want to tell their friends,” James Sagen, 22, who lives in Washington, told MS Connection. “But I told mine, and their laughter and humor helped me get through the months after diagnosis. Then I began a live blog. By chance, one girl replied that she had MS, too. Now she’s one of my best friends.”

my church for support,” the 20-year-old said. Tiffany, a dancer, attends Chicago’s Trinity United Church, where she learned “praise dancing” —ballet dancing to gospel songs. Now as an MS Ambassador, she performs praise dancing at Society events to spread the word.

Take a step

If you’d like to increase your support network, Real Talk. Real Answers. Living with MS in Your 20s and 30s, sponsored by the Society and MS LifeLines can help. This online program provides young adults with an opportunity for candid and frank discussion and offers answers to some of the questions that they have about living with MS. Visit RealTalkRealAnswers.com.

Just recently, James’ Society chapter started luncheons for young people. “Meeting more young people with MS opened my eyes,” James said. “It made me see you can live with MS comfortably.” Tara Lane was diagnosed in 2000 when she was getting married in Vail, Colo. “I participated in Bike MS, and Walk MS events,” said Tara, 37, who teaches figure skating. “That gave me the idea for an MS Skate-a-Thon. When I met another woman in the skating community who had MS, we started our own group, reaching out to more people. The greater my network is, the better educated I become.” When Tiffany Jones went off to college, she decided not to disclose her MS on campus. “I have my family, the Society and members of 12 JOIN THE MOVEMENT: nationalMSsociety.org MSConnectionspring.indd 12-13

Smart tax prep for people with MS

MONEY MONEYMATTERS MATTERS

Getting the support you need

MS

by Martha King

Deductions, exclusions and credits that may apply to YOU Taxes pay for many things we all need. But that doesn’t mean any of us should pay a penny more than the law requires. IRS Publication 907, Tax Highlights for Persons with Disabilities has important details for you or your tax preparer. It’s downloadable at www.irs.gov or telephone 1-800-829-3676. ∫ Gross Income: Supplemental Security

Income (SSI) and certain veterans (VA) disability benefits are excluded from your gross income. However, Social Security Administration payments may be taxed, and income from disability insurance that was paid for by your employer (or former employer) is taxable. See IRS publication 525.

∫ Impairment-Related Work Expenses: If

a physical or mental disability limits your ability to function as an employee, you may be able to deduct work expenses related to that impairment. Examples: wages for an on-the-job personal care attendant, or the cost of a text-to-speech computer program. See IRS publication 907 for details.

∫ Medical Deductibles: You may deduct

your medical and dental expenses for the year to the extent that they exceed 7½% of your adjusted gross income, with a few exceptions. You may count the cost of home improvements or equipment to alleviate your physical or mental condition as medical expenses. Examples include

installation of ramps or air conditioning, the amounts paid to purchase, train and maintain a service animal, and more. See IRS publication 502. ∫ Dependent Care Credit: If you pay

someone to care for a dependent person so that you can work or look for work, you may claim a credit for those expenses. The dependent can be your spouse or another adult who lives with you, even if that person has some income, as long as he/ she is physically or mentally unable to be left alone. See IRS publication 503.

∫ The Earned Income Credit (EIC): You

may be due a cash payment if you worked in 2008 for a low annual wage — up to $12,590 for a single person with no dependents and up to $39,783 for a married couple, filing jointly, who have more than one dependent child. To get the check, you have to apply. See Publication 596.

∫ Credit for the Elderly and Disabled: Low-

income individuals with taxable disability income may qualify for a tax credit. See Publication 524.

Start planning now. Get free help from the IRS at 1-800-829-1040. Call early, not on April 14th! TOLL FREE NUMBER 1 800 344 4867 13 3/18/2009 10:26:51 AM


M

S activists and others in the disability rights movement changed the course of history when they helped to push the ADA Amendments Act through Congress. President Bush signed the legislation in September 2008. The Act became effective January 1, 2009, bringing millions of people back under the protection of the Americans with Disabilities Act of 1990 (ADA).

How the ADA was eroded

As originally written, the ADA was designed to ensure that all people with disabilities could receive reasonable accommodations in the workplace. But over time, court rulings narrowed the definition of “disability” to exclude those who could “control their symptoms.” This included people with MS responding well to their disease-modifying drug. Sen. Tom Harkin, D-Iowa, the chief sponsor of the ADA Amendments Act, described the situation: “The more successful a person is at coping with a disability, the more likely the court will find that they are no longer disabled and therefore no longer covered under the ADA.”

14 JOIN THE MOVEMENT: nationalMSsociety.org MSConnectionspring.indd 14-15

The new Act reverses four Supreme Court decisions that had eroded ADA coverage for people with MS and other conditions, including diabetes and epilepsy, that are controlled by medication, are episodic and/ or do not always severely restrict major life activities.

New protections

Starting this January, courts may not consider “mitigating measures” such as prescription drugs, hearing aids or artificial limbs. The new law says “an impairment that is episodic or in remission is a disability if it would substantially limit a major life activity when active.” To learn more about this historic bill, and the protections it provides, visit adabill.com.

Coalition moves to end the Medicare wait

I

n November 2008, more than 75 organizations, including the National MS Society, launched a national campaign to end the two-year waiting period for health-care coverage through Medicare that follows a person’s initial approval for Social Security Disability Insurance.

An unjustifiable delay

The newly formed Coalition to End the Two-Year Wait released a letter to members of Congress, urging them to end the “unjustifiable delay” for Medicare. The coalition declared its support for the Ending the Medicare Disability Waiting Period Act, sponsored by Sen. Jeff Bingaman (NM) and Rep. Gene Green (Tex.). Green attended the kickoff event on November 12, 2008. When the 111th Congress convened this

MS RESEARCH

ADVOCACY

Amendment restoring ADA protections passed

Activists secure $5 million for MS research

MS activists made history last fall when they moved Congress to approve $5 million for MS research through the Congressionally Directed Medical Research Programs (CDMRP). This is the first time that MS has received a line item allocation under CDMRP, which is funded through the Department of Defense (DOD).

Activism victory

The movement to obtain MS research funds from the DOD began in late 2006 when activists collected more than 100,000 signatures. Activists participated in hundreds of congressional meetings, took the case to the media and town hall forums, and collaborated with members of the American Academy of Neurology, the Paralyzed Veterans of America, United Spinal, AMVETS, the Vietnam Veterans of America, and the Disabled American Veterans to petition Congress.

January, the bill was reintroduced in both the House and Senate. The bill had wide support during the 110th Congress with 103 co-sponsors in the House and 23 in the Senate.

“Sick and uninsured”

In a statement for the coalition, Yvonne Brown described her long and awful journey to get health-care coverage after her diagnosis with MS in 2000. “I had nearly 40 unfilled prescriptions that would have helped treat my MS and associated symptoms,” she said. “I would take one pill every other day rather than two pills twice a day to stretch my supply. With my disease-modifying drug, I would administer that injection every other week instead of once a week as prescribed. Because of this constant worry, I developed severe hives,

all due to the stress of unpaid medical bills, being homeless, being sick and uninsured.”

Too high a cost

According to the coalition, 1.5 million people are waiting for Medicare coverage. Brown is now insured through Medicare. But, she said, “I struggle daily with the devastating financial effects and health consequences of living through the Medicare two-year wait period.”

Get moving

To learn more about the coalition and get involved in MS advocacy, visit nationalMSsociety.org/advocacy, where you can sign up to receive news and updates on health policies, help find solutions to MS issues, and take action on legislation that matters. TOLL FREE NUMBER 1 800 344 4867 15 3/18/2009 10:26:51 AM


M

S activists and others in the disability rights movement changed the course of history when they helped to push the ADA Amendments Act through Congress. President Bush signed the legislation in September 2008. The Act became effective January 1, 2009, bringing millions of people back under the protection of the Americans with Disabilities Act of 1990 (ADA).

How the ADA was eroded

As originally written, the ADA was designed to ensure that all people with disabilities could receive reasonable accommodations in the workplace. But over time, court rulings narrowed the definition of “disability” to exclude those who could “control their symptoms.” This included people with MS responding well to their disease-modifying drug. Sen. Tom Harkin, D-Iowa, the chief sponsor of the ADA Amendments Act, described the situation: “The more successful a person is at coping with a disability, the more likely the court will find that they are no longer disabled and therefore no longer covered under the ADA.”

14 JOIN THE MOVEMENT: nationalMSsociety.org MSConnectionspring.indd 14-15

The new Act reverses four Supreme Court decisions that had eroded ADA coverage for people with MS and other conditions, including diabetes and epilepsy, that are controlled by medication, are episodic and/ or do not always severely restrict major life activities.

New protections

Starting this January, courts may not consider “mitigating measures” such as prescription drugs, hearing aids or artificial limbs. The new law says “an impairment that is episodic or in remission is a disability if it would substantially limit a major life activity when active.” To learn more about this historic bill, and the protections it provides, visit adabill.com.

Coalition moves to end the Medicare wait

I

n November 2008, more than 75 organizations, including the National MS Society, launched a national campaign to end the two-year waiting period for health-care coverage through Medicare that follows a person’s initial approval for Social Security Disability Insurance.

An unjustifiable delay

The newly formed Coalition to End the Two-Year Wait released a letter to members of Congress, urging them to end the “unjustifiable delay” for Medicare. The coalition declared its support for the Ending the Medicare Disability Waiting Period Act, sponsored by Sen. Jeff Bingaman (NM) and Rep. Gene Green (Tex.). Green attended the kickoff event on November 12, 2008. When the 111th Congress convened this

MS RESEARCH

ADVOCACY

Amendment restoring ADA protections passed

Activists secure $5 million for MS research

MS activists made history last fall when they moved Congress to approve $5 million for MS research through the Congressionally Directed Medical Research Programs (CDMRP). This is the first time that MS has received a line item allocation under CDMRP, which is funded through the Department of Defense (DOD).

Activism victory

The movement to obtain MS research funds from the DOD began in late 2006 when activists collected more than 100,000 signatures. Activists participated in hundreds of congressional meetings, took the case to the media and town hall forums, and collaborated with members of the American Academy of Neurology, the Paralyzed Veterans of America, United Spinal, AMVETS, the Vietnam Veterans of America, and the Disabled American Veterans to petition Congress.

January, the bill was reintroduced in both the House and Senate. The bill had wide support during the 110th Congress with 103 co-sponsors in the House and 23 in the Senate.

“Sick and uninsured”

In a statement for the coalition, Yvonne Brown described her long and awful journey to get health-care coverage after her diagnosis with MS in 2000. “I had nearly 40 unfilled prescriptions that would have helped treat my MS and associated symptoms,” she said. “I would take one pill every other day rather than two pills twice a day to stretch my supply. With my disease-modifying drug, I would administer that injection every other week instead of once a week as prescribed. Because of this constant worry, I developed severe hives,

all due to the stress of unpaid medical bills, being homeless, being sick and uninsured.”

Too high a cost

According to the coalition, 1.5 million people are waiting for Medicare coverage. Brown is now insured through Medicare. But, she said, “I struggle daily with the devastating financial effects and health consequences of living through the Medicare two-year wait period.”

Get moving

To learn more about the coalition and get involved in MS advocacy, visit nationalMSsociety.org/advocacy, where you can sign up to receive news and updates on health policies, help find solutions to MS issues, and take action on legislation that matters. TOLL FREE NUMBER 1 800 344 4867 15 3/18/2009 10:26:51 AM


WAYS TO GIVE

Join the Movement—without leaving your office Designate the National MS Society in your employee giving campaign from each paycheck. Every year, over 1.5 Combined Federal Campaign (CFC) Donations can also million employees If you work in the public sector or you be made as a onesupport important are in the military, contributions can be time contribution by non-profit organizamade through the CFC by selecting the writing a personal tions nationwide designation number 11409. If you work check. When you through employee in the private sector, look for us listed choose the National giving campaigns. under Community Health Charities or MS Society your If you are a federal ask your campaign coordinator about donation comes government employee designating a gift to the Society. directly to our chapter. or your private employer offers a Your company doesn’t offer an employee charitable giving campaign, you can help giving program? Talk to your benefits move us closer to a world free of MS by administrator about starting one. And call designating a contribution to the National us. We can give you the resources you need. MS Society. Participating in a charitable giving program Most charitable giving programs offer is an easy way to help provide vital services, employees the opportunity to make an spark public policy advocacy, and fund annual pledge, which means a portion of cutting-edge research. their donation is automatically deducted NON-PROFIT ORG. U.S. POSTAGE PAID PHOENIX, AZ PERMIT NO. 01442

5025 E. Washington St. Suite 102 Phoenix, AZ 85034

16 JOIN THE MOVEMENT: nationalMSsociety.org MSConnectionspring.indd 16

3/18/2009 10:26:52 AM


Spring 2009 - MSConnection