Working for Veterans

On March 6, 2019, the National MS Society entered into a four-year Memorandum of Agreement with the Veterans Administration. This partnership will provide veterans living with MS comprehensive and coordinated care and services.

Society president and CEO Cyndi Zagieboylo, a proud daughter of a veteran, reflects on what this means:


My father was a veteran. He joined the Air Force at 17 years old, at the tail end of World War II.

Like so many during that time, he didn’t talk much about his experience, but I have many special memories of him honoring veterans and those who served and made the ultimate sacrifice.

I remember when I was a child, my dad sold poppies, the flower of remembrance, around Veterans Day. He served on a committee to organize our town’s Memorial Day parade. As a small child, I marched with him and attended the ceremonies and later my children marched with their grandpa.  Over time, we all learned the importance of this remembrance for him and for our small town.
My dad had so much pride in the fact he served his country and he never forgot the friends he lost.

Our veterans living with multiple sclerosis need our support—and our Memorandum of Agreement with the Veterans Administration is a very clear commitment from the federal government and the National MS Society that we are here for them—and will be here for them.

Right now, there are about 70,000 US veterans living with multiple sclerosis.

We don’t know why so many have this disease, but we believe for some of these veterans, their MS is related to their combat service.

In multiple sclerosis, the body’s own immune system targets the central nervous system and causes damage to important cells and tissues. This damage slows or stops nerve transmission. Right now, the progress, severity and specific symptoms of MS in any one person can’t be predicted.
 
We have medications that can slow the progression of the disease, but so far, no cure.

Both the federal government, through the Department of Defense, and the National Institutes of Health, and the Society are actively funding promising MS research. As we aggressively seek a cure, we want to ensure everyone with this disease can live their best lives today, including our veterans.

That’s why the Society was a strong advocate for establishing the VA MS Centers of Excellence and we are proud to have been involved with the leadership of the centers since their inception.

For years, we have worked collaboratively with the VA on programs for both professionals and veterans. There is a special page on the Society's website to help connect veterans to both Society programs and the MS Centers of Excellence clinical sites.

The VA estimates it cares for about 20,000 veterans living with MS. We know there are many more who haven’t yet connected with the Society or the VA and we know we must find ways to reach them, engage them and help them live their best lives.

If you know a veteran living with MS ask him or her if they are connected to the Society, and if not, point them in our direction. We have many resources and programs that can help, from wellness workshops to self-help groups. Most importantly, we can make sure every veteran is connected to the MS specialists at the VA who can help them navigate the medical challenges of this disease.

During the signing ceremony in Washington, D.C., we were fortunate to hear from Nick Mangus, a decorated Army veteran living with MS. Nick’s MS has progressed where he now uses a powered wheelchair to get around. It was very moving to hear him speak of his love of his family, his country and about how proud he was to have served in the military. He also spoke about the exceptional care he’s received from the VA and the important Society-run programs that have helped him and his wife Margee deal with his disease.
 
Professionally, I am so proud of the work we do with the VA and look forward to deepening this relationship to provide the best care, information and resources to our veterans living with MS.
Personally, this also gives me the chance to continue the good work my dad first instilled in me years ago.
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Cyndi

Cyndi Zagieboylo

Cyndi Zagieboylo began her National MS Society career in 1985 and has held many responsibilities and positions at the Society. Cyndi has worked with every CEO of the organization, including the National MS Society founder, Sylvia Lawry, and has made achieving the Society’s vision of a world free of MS her life’s work.

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    7 Comments

  • Martha Hampton   May 11, 2019 11:06 AM
    Went to a baseball game last night at raley field in Sacramento, CA to raise awareness of MS. It was a great event. Will go to more events about the disease.
  • Evan L   May 16, 2019 2:10 PM
    As a member of the National MS Society, I am glad that this organization sees the importance of assisting veterans comprehensive and coordinated care and services with the Veterans Administration.

    As a disabled marine veteran rated for MS (service connected), I am not too clear by National MS Society entered in a four-year Memorandum of Agreement with the Veterans Administration how this will assist me and other veterans with continued much-needed care. As we all know, timely access to care is an essential aspect of health care quality. The Department of Veterans Affairs (DVA) is working to overcome the significant and well-documented challenges it has faced in providing veterans with timely access.

    In fact, several organizations have Memorandum of Agreement with DVA will little to no positive results getting veterans correct and timely medical services. Paralyzed Veterans of America (PVA) is one of those who are participating with DVA under a Memorandum of Agreement. As an active member of PVA which specializes in providing services for veterans and service members who are severely injured and suffer disabling diseases. My assigned PVA Service Officer, which is an accredited expert in VA benefits and legally represent me and my dependents, before the VA. Has difficulty holding DVA accountable in my case.
    I am not too sure how you can help.

    Sincerely,
    Puzzled Veteran
  • Scott Daravanis   May 16, 2019 2:54 PM
    I am the facilitator for the Prescott (AZ) Area / VA MS Support Group for Veterans and non-Veterans. We meet the 2nd Thursday of each month in the Bob Stump Medical Center at the Prescott VA, which serves the veterans of northern Arizona.
    We moved our long-time public group to the VA in July 2018 and have a handful of veterans attending and will always have room for more.
    Thank you for the opportunity to spread the word.
  • William G. Russell   May 16, 2019 6:03 PM
    I am a Navy veteran from 1976 who deals with SPMS daily. I can still walk with a cane but it's getting tougher. Still hoping the VA will approve my disability claim. But the reality of the system and beauraucy is daunting. Words don't make ends meet and living with this f'ing disease is not easy.

    My intellect is in tack, but the physical, emotional and cognitive issues make working impossible for me. I was a high wage earner back in the day as an accounting controller. No longer though.

    I've attempted suicide twice, due to my precived lack of hope. Not sure why I'm still here but whatever, I am.

    Physic's is my new love. I won't take welfare but if I've earned or paid for a benefit then it's all good. I paid for 40+ years into SSDI and served as a Quartermaster navigating a guided missile destroyer in the Pacific. I'm proud of what I did and learned.

    Thanks for the support,
    William G. Russell
    Bodfish, CA
  • terry swartz   May 16, 2019 6:19 PM
    I served in the U.S. Navy for 10 years...1976-1986 I was diagnosed with MS in 1996 and was told it had been to long since my Honorable Discharge that it could not have anything to do with the Navy. There was a sailor from my boat USS Estocian that was discharged with full medical around the same time I got out and he was diagnosed with MS. I have heard there are some more from my boat (time was 1983-1986.
  • Gwen Mugliston   May 17, 2019 7:28 PM
    I am an honorably discharged veteran. A vision problem was my first sign of MS at age 27. I am now almost 80 yo. The Pittsburgh PA, VAMC, is my hospital and so far has done a very good job. I wonder if it is one of your Centers of Excellence? I am taking Ampyra and it enables me to walk. Did the Nat MS Society have anything to do with Ampyra's development? Thank you for your work!!
  • Avatar
    MS_Navigators  Jun 19, 2019 1:56 PM
    William, thank you so very much for your service.

    I'm concerned about you, and would like to offer support, this is also for anyone finding the need for additional, urgent emotional support.

    I’m so sorry to hear that you’re struggling and want you to know that you don’t have to go through this alone. The Society has resources and support to help people get through difficult times. I’d like to urge you to call our MS Navigator Program to find out more 1-800-344-4867. There is also a crisis helpline that you can call 24 hours/day 1-800-273-TALK (8255). I hope you’re able to find the support and hope needed to get through this time.

    Jess, MS Navigator