In March of 2022, Paralyzed Veterans of America announced the formation of their MS Committee to represent the interests of Veterans with Multiple Sclerosis. The Committee will act as a voice on legislative issues impacting Veterans with MS, provide first-hand input from its members with MS, and serve as an expert resource for all Veterans living with the disease. One in four PVA members suffers from MS, and an estimated 18,000-20,000 Veterans receive VA health care for MS each year.
In recognition of MS Awareness Month, we sat down with the co-chairs of PVA’s MS Committee: U.S. Marine Corps Veteran and National Vice President Hack Albertson, and PVA Mountain States Chapter President Izzy Abbass, a U.S. Army Veteran, to talk about the Committee’s work so far and how PVA will serve Veterans with MS.
When you hear, “Paralyzed Veterans of America,” you don’t necessarily associate the organization with Multiple Sclerosis.
Izzy Abbass: I was diagnosed with MS in 2017. Shortly after, the former Mountain States Chapter President and my former Company Commander saw me with a cane. After I told him I had MS, he put his finger in my chest and said “Get with PVA – they can help.” Well I did, and they did.
But initially, only Veterans with spinal cord involvement with their MS could be members of PVA. While the official numbers state that 82% of Veterans with MS in their brains have it in their spines as well, we think that number is 100% - previous MRI technology just doesn’t capture all the spinal lesions.
Hack Albertson: Medical data showed any MS diagnosis involved the spinal cord with lesions that had been missed in prior years technology and MRI advancements. We worked with the PVA Board of Directors, Executive Committee, and President to make our membership diagnosis more inclusive.
Izzy Abbass: This led to the formation of an ad-hoc MS committee, which led to a resolution to make all honorably discharged Veterans with MS eligible for PVA membership.
Talk about the formation of the MS Committee and why PVA felt it was important.
Hack Albertson: I have been blessed to serve as an elected PVA leader for several years now. It is amazing the scope of what our PVA team does in serving all of our SCI/D Veterans – and I felt we needed focus committees on the diversity of injury and disease in the Veterans we serve. It's not that PVA should give more attention to any one type of injury, it is that each group of Veterans wants and needs to be heard on issues that affect their healthcare. The real effort is to learn, educate and share as much information as possible on the healthcare and life issues surrounding our different diagnoses. My first ask was for a women's committee; and the next ask was for an MS Committee.
What are some of the priorities of the Committee in this next year?
- Establish and expand our partnerships with other organizations, including the CMSC, MS Society and MS Association.
- Ensure each PVA chapter has a lead for MS members and coordinates appropriate activities for our MS Members.
- Increase visibility of PVA as the specialists in MS as well as ALS and Spinal Cord Injuries in the Veteran and active military.
In just the past year, you’ve made an impact.
Hack Albertson: We are averaging about a 100 new members a month for MS and ALS. The PVA membership staff is doing an amazing job of outreach. The priority is to share information and raise awareness that PVA specializes in helping Veterans with MS benefit claims. And we now have an MS card that shares symptom and diagnosis bullets for healthcare and the public.
It has been amazing to see the passion and interest of the Veterans participating. All PVA Chapter MS contacts are invited to attend our monthly meetings. Each one has a voice. We launched a quarterly newsletter that shares information on research and education topics, plus anything ongoing with trials and new technology.
We have plans to have three focused MS Walks at PVA Chapter cities that will allow for the most participation and exposure for us. We plan to grow sports, networking and peer mentoring opportunities for all of our Veterans with MS and their families.
MS is often misunderstood. Izzy, what would you like the public to know about this disease?
Izzy Abbass: MS impacts each person differently. While we have many commonalities, symptoms can be more or less severe across each individual. We may not appear to have a disability, but we do.
Are there things you wish you had known when you were first diagnosed?
Izzy Abbass: There were a ton of things – but the biggest was finding positive role models. Many of the support groups I first found were all doom and gloom. PVA has been a breath of fresh air for me at a time when I was most down. Speaking of fresh air, I recently went camping for the first time since my diagnosis in 2017, and I was incredibly moved by the opportunity to be out in nature among the sunshine, foliage, and freedom that it gave me.
How is PVA uniquely suited to serve Veterans with MS?
Hack Albertson: PVA has the very best National Service Officers trained to serve and help MS Veterans with their claims and benefits. PVA NSO's are experts in writing and working their claims for VA healthcare and benefits. Our Chapters and programs are there to help them get the support and information to live their best life.
Izzy Abbass: We are the one VSO that specializes in issues surrounding MS (as well as ALS and spinal cord injuries). Our National Service Officers are the most knowledgeable in working with Veterans with MS to advance their claims within the VA.
Any closing thoughts?
Hack Albertson: PVA is working hard to educate and share as much information on this disease as we learn it. We are here to support the Veteran from their diagnosis and for their full long life span. There is no one better than PVA to help serve them.
Izzy Abbass: I’d like for the public to understand that members of the military have a higher incidence of MS than their civilian counterparts – and even if it’s not readily apparent that we have a disability, we do, and we’d appreciate if you would be a little forgiving when we are slow.
But most importantly: Our diagnosis may have been a low point in our lives, but our living is not over.
Membership is open to all members with MS! Apply for membership on our website.