About MSAA

As a national nonprofit organization, the Multiple Sclerosis Association of America is a leading resource for the entire MS community, improving lives today through vital services and support. MSAA provides free programs and services, such as: a toll-free Helpline; award-winning publications including a magazine, The Motivator; website featuring educational videos and research updates; S.E.A.R.C.H.™ program to assist the MS community with learning about different treatment choices; a mobile phone app, My MS Manager™; a resource database, My MS Resource Locator; equipment distribution ranging from grab bars to wheelchairs; cooling accessories for heat-sensitive individuals; educational events and activities; MRI funding and insurance advocacy; and more. For additional information, please visit http://www.mymsaa.org or call (800) 532-7667.

Sneaky Alternatives

By Lauren Kovacs

Alternative approaches to MS are pretty personal. Many of us will try just about anything to add to our medication routine. Short of crazy stuff like putting fried eggs on my eyes or sleeping with spiders, I am guilty of trying lots of alternatives.

Some things might help some. I heard massage is great, but it turns me into a sleepy blob. Too relaxed? As if I don’t already fight the fatigue monster 24/7, massages rubs me into a sloth. Not for me. Continue reading

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What’s the Alternative?

By Doug Ankerman

As a twenty-two year member of the MS Club, I have tried more than my share of alternative approaches to treat multiple sclerosis.  From diets to massage to supplements like turmeric and aloe vera gel.  I’ve questioned my dentist about Mercury fillings.  Researched into CCSVI.  With secondary-progressive MS, I found myself grasping at anything and everything to slow the gradual downward slide.

Here are a few others I’ve dabbled with… Continue reading

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Beyond Doctor’s Orders: Considering Complementary and Alternative Treatments for Healing

By Stacie Prada

Living with an illness with no proven cure leads me to treat myself as a guinea pig.  I read about the latest studies and breakthroughs for MS and auto-immune diseases. I seek recommendations from people that are managing their health well.  I compare what I’m doing to the treatment and see if it makes sense for me. If the risk is low and I’m not doing it already, I’ll give it a shot.  It’s a very unscientific approach. But given I’m bumping up against an unknown date when my MS could progress, I’m not willing to wait until all the studies are in when it could be too late for me. Continue reading

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The Underground World of MS: Part 2

By Alene Brennan

How to Navigate the Underground World of MS

Being the invisible disease that it is, multiple sclerosis can make you feel like you’re living in an underground world. So let me lay out a roadmap to help you navigate to better understanding and better health. Continue reading

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The Underground World of MS: Part 1

By Alene Brennan

My first reaction when I received the diagnosis of Relapsing Remitting Multiple Sclerosis? Do NOT tell a soul. People would judge me and put limits on me. Not to mention I was 37 years old and single. MS isn’t exactly the trait I wanted featured on my online dating profile.

I kept my diagnosis a secret for more than a year. Continue reading

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Meet the Board

MSAA strives to be a leading resource for the entire MS community by improving lives today through vital services and support – and we could not accomplish this without the help of our volunteer board members. MSAA’s Board of Directors is comprised of accomplished professionals from across the country who volunteer their time to further MSAA’s mission. With our ongoing series, Meet the Board, we hope to introduce you to our wonderful volunteer board members!

MSAA is proud to highlight two volunteer board members this month – Wendy Scott and Ira Levee, Esq.

Wendy Scott
Member of the Programs and Services Committee

Professional Background: Wendy Scott is a professor of law at the Mississippi College School of Law, where she made history as the first African-American to serve as the Dean for the MC School of Law, which she did with distinction from 2014 to 2016. Professor Scott teaches Constitutional Law, Civil Procedure, Evidence, Native American Law, and Gender and the Law. Her scholarship focuses on constitutional theory and school desegregation and she is currently completing a book of dissenting opinions of Justice Thurgood Marshall with her coauthor.

Ira Levee, Esq.
Board Secretary and Member of the Development Committee

Professional Background: Ira Levee, Esq. is a Senior Legal Editor at Thomson Reuters/Practical Law and is an accomplished attorney with extensive experience in bankruptcy law as well as commercial and bankruptcy litigation. Mr. Levee is a member of the American Bankruptcy Institute and has provided legal services for the Volunteer Lawyers for Justice Bankruptcy Pro Bono Program (Newark, NJ) and the Honorable Morris Stern Bankruptcy Pro Bono Project (Rutgers University School of Law – Newark, NJ).


What inspired you to join MSAA’s Board of Directors?

Scott: “I was honored with a nomination to the MSAA Board by James Anderson. I had shared with Jim the story of Stephanie, my sister with multiple sclerosis, and the challenges she faced being diagnosed and affording the medicine needed for successful treatment. My family began donating to research, under the leadership of my sister Sandra, and we are now delighted to support the work of MSAA, which provides direct and needed services to people living with multiple sclerosis.”

Levee: “I have had a longtime association with MS, having served on the Board of Trustees of another MS non-profit organization. After leaving that group, I still wanted to volunteer to help those with MS. After speaking and meeting with several board members of MSAA, I knew this was a group of people that wants to improve the lives of those afflicted with MS. I was invited to join the Board in January 2017. I am proud to be a member of the Board and continue to be amazed by the dedication of the other Board members and more so, by the staff who never seem to stop. Their hard work inspires me to work harder for MSAA.”

What are your goals as an MSAA Board Member?

Scott: “I intend to learn more about multiple sclerosis and use this knowledge to propose ideas for more services. I especially appreciate the focus of MSAA on the particular challenges of women and minorities with multiple sclerosis. I hope to help educate even more communities about our work and find more people in need of the services we provide.”

Levee: “My goals are to get people more aware of all that MSAA has to offer those with MS and their families. This includes not only those with MS but individuals, corporations and medical providers, who can help support, financially and through other means, MSAA’s efforts. The services and products offered by MSAA are so valuable and important, but get little publicity. We need to get the word out through various events. As a Board member, I would like to see a program where Board members can meet people with MS to talk about MS and MSAA.”


Editor’s Note: MSAA is extremely proud and honored to enlist the support of Wendy Scott, Ira Levee, and all of our dedicated Board Members who volunteer their time, expertise, compassion, and leadership to help us achieve our mission of improving lives today for the entire MS community. We are very grateful for their service and look forward to their continued support as we strive to serve more people in more places than ever before. Thank you once again Wendy and Ira!

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Creating the Support Network I Want

By Stacie Prada

Living with a chronic and progressive illness like MS includes living with fear, pain and diminishing abilities. It’s rough.  It can make me grouchy and impatient. But it’s not a pass to treat people poorly. It takes more effort to be appreciative and pleasant when I’m tired and feel crummy, but it’s a tremendous life skill to cultivate.   Sometimes I succeed, and sometimes I fall short of my goal.  When that happens, I follow up with that person and try to repair any damage.

I’d rather people support me because they want to be there with me.  If someone is helping me solely out of obligation or pity, their resentment or condescension will come through in every interaction.  No thank you.

Feeling like a burden isn’t helpful to anyone’s physical or mental wellbeing.  And being treated like a burden isn’t fair.  Every person has challenges and limits, and we all have needs. Needs aren’t weaknesses. Some of our needs are just more visible or less common compared to what’s thought of as normal.

My best relationships are those of mutual admiration and appreciation.  We help each other often, but we make sure we respect our limits so that nothing is done with resentment.

I’ve put together some guidelines for myself to build healthy and positive relationships:

  1. When people show kindness or concern, accept it graciously. If I discourage it because I’m embarrassed, grouchy or feeling like they’re being pushy, they’ll eventually stop asking or providing support.
  2. Notice when I feel better about myself after interacting with someone. Put extra effort into connecting with them.
  3. Notice when I feel worse after interacting with someone. Consider possible reasons, and be honest about whether it’s me or them. See if there are ways to improve the relationship.  Let it go if it’s not a critical relationship. Pursue sincere conversation or counseling for the relationships I’m not willing to let go.
  4. Know that letting go of some relationships will be necessary for my health. This is really tough. Try to wish them well and move on.
  5. Be a cheerleader for others. Share in their joys and accomplishments genuinely and without jealousy, and express sympathy and encouragement when they’re having a hard time.
  6. Be willing to accept help. I’d love to be completely self-sufficient and strong, but refusing help pushes people away. Remember accepting help might make them feel better too.
  7. Grant people grace when they periodically commit a friendship blunder. Hope they’ll do the same for me. People will never respond perfectly in every situation, and anyone expecting perfection is being unreasonable.

Striving to follow these guidelines has improved my relationships immensely, and it’s created a positive support network that I can count on when I need it. We support each other and don’t keep score. Having them around makes every challenge easier to tackle and every loss more tolerable to accept.  Plus, the effort I put into adding positive energy in the world helps me feel I have value and just plain feels good.

*Stacie Prada was diagnosed with RRMS in 2008 at the age of 38.  Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/ 

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National Volunteer Week

Celebrate National Volunteer Week April 15-21, 2018!

Welcome to National Volunteer Week!  Established in 1974, National Volunteer Week began as a way to set aside a time to volunteer for a cause and to recognize the amazing people who dedicate their time and service year-round.

Volunteers are an essential part of any organization and it is no different for MSAA.  Our selfless volunteers who have partnered with MSAA over the years help us spread the word, make our programs possible, serve as ambassadors for our online forum and improve lives today for the entire MS community.

What does service mean to you?  Why do you volunteer?  Let us know how you are celebrating National Volunteer Week by sharing your story with us on social media using the hashtag #MSAAVolunteer.

Do you have any interest in volunteering with MSAA?  Visit our Volunteer page for more information, or contact us at volunteer@mymsaa.org.

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It Takes a Village to Navigate This Life with Multiple Sclerosis

By Penelope Conway

Do you know that old saying “It takes a village to raise a child”? Well, I happen to know for a fact that it takes a village to navigate this life with multiple sclerosis.

I was always an independent person. One of those “I can do it by myself” kind of people. I could change the oil in my car, repair a leaking pipe under the house, open those impossible pickle jars and move furniture without even breaking a sweat. Having to shift that type of independence after MS came along was really hard for me.

I found that I needed help getting to appointments because my eyesight and motor function had decreased making it unsafe for me to drive myself, especially if going long distances.

I needed reminders (albeit sometimes annoying) for some of the simplest things in life like “be sure to set your trash out today for pick-up.” Something I wouldn’t have forgotten in times past.

I needed help pulling wet clothes out of the washing machine because my hands just couldn’t properly grip the wet clothes. Then folding the clothes and towels once they were dry would take me hours to complete.

I found that there were tons of things I needed help with. As an independent, I-can-do-it-myself kind of person, that was not an easy thing for me to come to terms with but it has gotten easier over time. I can still be a bit stubborn, but I know my limits and reach out when I know I need help.

If I can enlarge my circle of support, I am always willing to give it a try. I was even talking to my neighbor yesterday about calling on her if I have trouble opening those easy-to-open packages that aren’t really easy to open or when I can’t get a pill bottle open. She was more than happy to be asked to help out.

One thing I found to be extremely important is to let those that are helping you out know just how much you appreciate what they are doing. If they know you value their support, care, and love, it gives them a sense of purpose and they know that the things they do matter. Even the small things like picking up the mail or stopping by for a chat should never be taken for granted.

People need to know the time they put in to helping you makes a difference. They may say you don’t need to thank them, but thank them anyway. It always matters.

I have had some people that would always drag me down with their know-it-all advice and negative attitude, but do you know what I did? I cut my ties with them. Sometimes that is the healthiest thing you can do. MS is not any easy things to deal with and you don’t need any added stress to your day making things worse. Set up boundaries and don’t back down.

Surround yourself with positive people that lift you up.  You deserve to be happy.

*Penelope Conway was diagnosed with Multiple Sclerosis in November 2011. She is the author and founder of Positive Living with MS (positivelivingwithms.com) where she uses humor and her own life experiences with MS to help others navigate this unpredictable journey. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day.

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Five MSAA Resources for Care Partners

MSAA strives to be a leading resource to the MS community by providing free programs and services. But did you know that MSAA’s free programs and services aren’t just for individuals with MS?  Here are five MSAA resources that care partners can take advantage of, too:

  1. MSAA offers in-person educational programs about a variety of topics related to living with multiple sclerosis that are hosted throughout the country. These programs are presented with guest speakers who are experts in their fields, allowing attendees the chance to ask direct questions from the people who know best.
  2. This blog! MS Conversations features blog posts from many wonderful guest bloggers who are able to give insight and a voice to how individuals with MS experience their disease.  While everyone’s disease course and symptoms may be different, their posts offer unique perspectives that only a person living with MS can provide.
  3. MSAA’s award-winning publications are not just helpful for individuals with MS. These publications feature detailed information about various topics including: a general overview about multiple sclerosis, different therapy options, MS relapses, MS progression, and more.
  4. My MSAA Community, the free online forum where people can feel free to share information and experiences with other friendly and supportive members. Care partners are welcome to share their questions and get answers from other members of the MS community who may have had similar experiences.
  5. Feel free to also call MSAA’s toll-free Helpline at (800) 532-7667, ext. 154 to speak to one of our Client Services Specialists who are there to help answer any questions and offer additional resources if they are needed. Our Client Services Specialists can also be reached via our online chat feature, or via email at MSquestions@mymsaa.org
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