National Multiple Sclerosis Society — Unethical adherence to mission statement
After raising over $3000 for the society I had a life altering event 8 months ago. My handicapped accessible vehicle died. Suffering from Multiple Sclerosis since 1997 and becoming disabled, I turned to the Society for help. I am in need of financial assistance to purchase a handicapped accessible vehicle. After making the society aware of my situation they assured me that assistance was forthcoming. Since originally contacting them on 11/12/2016 the president / ceo Cynthia Zagieboylo emailed back thanking me for contacting her and instructed an employee to get in touch to resolve my situation. The person who called (Cyndi Rikert) specifically stated a person who could get me a vehicle would be calling. When the call never came I contacted them once again. This time I was informed that the Society doesn't help purchase vehicles. I ended up having a two way conference call with Constance McClary and Kristina McGraw on a Tuesday. At that time both ladies commented that giving them until Thursday would be enough time to put together enough resources to resolve the vehicle problem. Thursdays call turned out to be a three way conference call. This time with Lisa Custy as well as the previously mentioned ladies. I have recordings of both calls and regardless of what was said in the first call I.e. if given until Thursday etc., both conversations were almost exact replicas. Upon reflection by my personal health insurance case manager and myself it became clear that the Society has no intention of providing any assistance other than to assure me that assistance was forthcoming.
I only ask that the National Multiple Sclerosis Society do what they said they would do and purchase me, or at least contribute a significant amount towards the purchase of a handicapped accessible vehicle.
Attached are copies of the original emails. Recorded conversations can be provided upon request.
I'm glad you reached out!
Have you spoken with an MS Navigator? MS Navigators are highly skilled professionals equipped to partner with you to overcome obstacles. I have asked Cyndi Rikert to contact you to discuss in more detail your situation and how we can help, as you stated, continue living a productive life and feel successful
My name is Lisa Custy and I am a Vice President in our MS Navigator Services team with the National MS Society. I am aware of the concerning situation regarding information provided to you for an accessible vehicle, and am very sorry that we did not clearly communicate the Society's role and ability in connecting people affected by MS to financial resources. I understand our MS Navigator, Constance, provided information to access transportation and other resources, but I realize those don't address your desire to own an accessible vehicle.
I would very much like to speak with you by phone, and wonder if there is a time that would work well for you Paul, to determine how we can best work together to connect to solutions that can help you achieve your goals of independence and accessibility to your community. We could explore resources that offer discounted modified vehicles to purchase, and a credit union that offers low interest rates but I understand that these may not be viable options for you Paul, so we'll continue to partner with you towards what can be feasible solutions.
I understand you are in the midst of trying to overcome so many different challenges and I want you to know that the Society is here for you. I understand you've been frustrated through the process of reaching out to us for help, but I really want us to be able to connect with you on the phone. It's the only way we can work through the situation together.
Original contact made on December 2nd and it is now January 10th and I have as yet to receive any further information about my current situation.