About MS – Newest MSAA Publication

Posted on March 5, 2018 by MSAA

MSAA is pleased to announce its latest booklet, About MS. In this second edition, MSAA provides a comprehensive introduction to the development and treatment of MS, along with a great deal of useful information that touches on many aspects of the disease.

The second edition of About MS includes:

An overview of the history, development, types, and potential causes of MS
Information on who gets MS, how MS is diagnosed, and how disease activity is evaluated
Descriptions for treatments for both relapses and long-term disease activity
And more!

Read an excerpt from About MS here:

Initially, most people with MS experience symptom flare-ups, which are also known as relapses, exacerbations, or attacks. When someone experiences a relapse, he or she may be having new symptoms or an increase in existing symptoms. These usually persist for a short period of time (from a few days to a few months) and afterward may remain symptom-free for periods of months or years. This type of MS is referred to as relapsing-remitting MS (RRMS). Approximately 80 to 85 percent of people with MS are initially diagnosed with this form of the disease.

Over time, RRMS may advance to secondary-progressive MS (SPMS). This form of MS does not have the dramatic variations in symptoms that RRMS does, but rather has a slow, steady progression – with or without relapses. If relapses do occur, they usually do not fully remit. Without treatment, approximately half of individuals with RRMS convert to SPMS within 10 years. However, with the introduction of long-term disease-modifying therapies (DMTs), fewer individuals advance to this latter form of the disease.

Individuals who are not initially diagnosed with RRMS may be experiencing a more steady progression of the disease from the onset. Approximately 10 percent of the MS population is diagnosed with primary-progressive MS (PPMS), where individuals experience a steady worsening of symptoms from the start, and do not have periodic relapses and remissions.

Continue reading this booklet at mymsaa.org/publications/about-ms/ to learn more about multiple sclerosis history, diagnosis, treatments, and resources.

Read the Latest Issue of The Motivator

Posted on October 17, 2016 by MSAA

Service Animals and MS – read the newest Summer/Fall 2016 issue of The Motivator, available now in print and digital editions.

Read about the following articles in this issue of The Motivator:

Cover Story:
The Joys and Challenges of a Service Dog Partnership
Dr. Darbi Haynes-Lawrence takes readers along her eventful journey to partner with a service dog, encountering many benefits and hurdles along the way.

Up Front:
MSAA’s President and CEO Gina Ross Murdoch talks about record-breaking outreach, a new online community, and upcoming events to support MSAA’s vital programs and services.

Research News:
Information is given on newly approved Zinbryta™ (daclizumab) and two investigational medications, Ocrevus™ (ocrelizumab) and siponimod.

Read the latest issue at support.mymsaa.org/motivator.

MSAA Presents S.E.A.R.C.H.™ Live Webinar

Posted on September 26, 2016 by MSAA

While having more than a dozen FDA-approved treatments for relapsing MS is very encouraging, learning about the therapies and knowing what questions to ask your doctor can be very challenging. Because of this, the Multiple Sclerosis Association of America (MSAA) created its S.E.A.R.C.H.™ initiative several years ago and recently updated the program with a new booklet, workbook and now an upcoming live webinar!

Designed as a memory aid, the S.E.A.R.C.H.™ acronym represents six key areas that should be considered when “searching” for the most appropriate MS treatment. We invite you to register for our free, live webinar, How to S.E.A.R.C.H.™ for the Right MS Therapy for You!, on Wednesday, October 19, 2016 at 8:00 pm Eastern.

In this live, one-hour webinar, MS expert Dr. Carrie Hersh will:

Review the current landscape of MS therapies and those on the horizon
Discuss the importance of having a good doctor-patient relationship
Explain the S.E.A.R.C.H.™ acronym and how it helps people remember the six key topics to discuss with their physician when deciding on a treatment
Provide effective strategies for staying on treatment

Following the presentation, participants can engage in a Q & A session with Dr. Hersh from questions submitted through the S.E.A.R.C.H.™ webinar’s live chat feature. For more information about the S.E.A.R.C.H.™ initiative, please visit our website.

This webinar, along with other recently updated S.E.A.R.C.H.™ materials, has been made possible with support from EMD Serono and Sanofi Genzyme. MSAA is solely responsible for the development of S.E.A.R.C.H.™ and its content.

The 2016 MS Research Update Available Now From MSAA

Posted on May 25, 2016 by MSAA

The 2016 edition of MSAA’s MS Research Update provides a comprehensive overview of research findings on many experimental drugs currently under investigation for the long-term treatment of multiple sclerosis. Also included are new clinical trial data on some of the currently approved disease-modifying therapies, as well as directions for future research in areas such as stem-cell research, biomarkers, genetic studies, and gut microbiota.

In addition to the exciting research aimed at relapsing forms of MS, several studies are also looking into the treatment of progressive forms of MS. To assist individuals interested in learning more, trials with progressive forms of MS have been highlighted in bold for quick identification.

This year’s MS Research Update has been published jointly by the Multiple Sclerosis Association of America (MSAA), the Consortium of Multiple Sclerosis Centers (CMSC), and the International Organization of MS Nurses (IOMSN). MSAA greatly appreciates the support from the CMSC and IOMSN to assist with the production of this publication.

Read MSAA’s latest MS Research Update here

Latest Issue of The Motivator Now Available

Posted on April 29, 2015 by MSAA

The Winter/Spring 2015 issue of The Motivator is now available! Request your copy today or read it online with the all new digital edition! You can access the digital edition right from your desktop or mobile device and enjoy enhanced interactivity and special features such as tools to search for specific terms, change the font size, and add your own notes.

Read about the following topics in MSAA’s latest issue of The Motivator:

Cover Story:

Cognitive Issues with MS: Research, Strategies, and Support

…A common symptom of MS, cognitive issues may impact many areas of one’s life, including employment, relationships, adherence to medications, and other activities of daily living. This article details current research into cognition and multiple sclerosis, while providing strategies and support for reducing the effects of this often-challenging symptom.

Read the full story

Stories to Inspire:

…Following a severe relapse, Tina was left with loss of vision in one eye, dizziness, and balance problems. She had no idea that seeing-eye dogs are also trained to help mobility and balance. With her service dog by her side, Tina is ready to conquer the world!

Read the full story

Program Notes:

…Updates on MSAA’s programs are featured, including the MRI Access Fund, details on how to request cooling accessories to relieve heat sensitivity, and more.

Read the full story

Read the latest issue of The Motivator – and be sure to check out the features in the NEW digital edition!

MSAA’s MS Research Update Now Available

Posted on April 22, 2015 by MSAA

The 2015 edition of MSAA’s MS Research Update provides a comprehensive overview of research findings on FDA-approved disease-modifying therapies, as well as study results on many experimental treatments currently under investigation. This update also presents directions for future research in areas such as stem-cell research, biomarkers, genetic studies, and more.

Read MSAA’s latest MS Research Update here.

Communicating about Multiple Sclerosis with Young Children

Posted on March 4, 2015 by Samantha Schech

The diagnosis of a chronic illness such as multiple sclerosis (MS) has the capability to challenge a family on multiple levels. As if the diagnosis of a disease such as MS was easy to explain and discuss with adult friends and family members. Explaining the diverse symptoms of MS to a young child is a new challenge all in itself.

Deciding when to have a conversation with your children regarding the MS diagnosis is a personal decision that every family should discuss. Children are by nature, curious individuals. They may pick up that things have changed, or that Mommy or Daddy is acting differently. Depending on the child, some families may choose to introduce information about the disease early on.

MSAA has published two books to help guide families through this conversation with young children. Mommy’s Story and Daddy’s Story are geared for children age’s three to seven, to provide a starting point for future conversations regarding an MS diagnosis.

For on-going supportive information for children, the National MS Society also publishes a newsletter, Keep S’myelin to provide stories and activities regarding different challenges a parent may face with relation to MS.

If a child appears to have a difficult time with the adjustment to a new diagnosis in a parent, it may be helpful to seek additional professional support. A child therapist can help the child to express some of the fears or concerns that they are having. Different modalities such as art or music therapy can help young children who may not verbally be able to explain how they are feeling.

Do you have young children, and have you spoken with them regarding an MS diagnosis? What resources were helpful to you during this time?

Let Us Help You Help Others.

Posted on July 28, 2014 by MSAA

by Kimberly Goodrich, CFRE, Senior Director of Development

In previous blog posts and articles in our magazine The Motivator, I have addressed the controversy over whether charity ratings are really helpful in giving a true picture of an organization’s effectiveness in meeting their mission.

Earlier this month, I attended a luncheon on this topic with Steve Nardizzi, CEO of Wounded Warrior Project (WWP). Nardizzi gave several examples where ratings from charity watchdogs were not helpful in determining if an organization is meeting its mission. In some cases the ratings were even misleading. One example was the Central Asia Institute, formerly run by Greg Mortenson co-author of Three Cups of Tea. When Mortenson was ordered to pay back over one million dollars in misused funds, his organization had a four star rating. How does this help us decide where our dollars should go?

This makes it harder for the donor. There is no one single number that tells us if an organization is doing a good job or not. We need to dig deeper and ask questions about goals and impact – not ratios. Ask about the people they help. Is that number growing? Are they feeding more people? Saving more forests?

WWP continues to grow despite mediocre ratings. Why? Because its supporters see the incredible impact they are having on the lives of wounded veterans. Eight years ago they had higher ratings, but only 10 million to spend on programs. By making a conscious effort to invest in fundraising, marketing, and staff, they now have lower ratings, but spend 176 million on programs for veterans. By ignoring the ratings and focusing their resources on their mission, more veterans are helped. And really, isn’t that what it’s all about?

At MSAA our mission is to improve the lives of those living with MS. Like WWP, the amount we spent on fundraising went up. Some think this is bad. However, this increased fundraising helped our overall rating to go up. This increase in fundraising led to a significant increase in revenue (16.5% growth last year). This increased revenue in turn allowed us to help more people living with MS. Our toll-free Helpline assisted 6% more people. We provided ongoing MRI assistance to 9% more people, and diagnostic MRI assistance to 70% more people than the year before. Our mobile phone app was downloaded by an additional 7,000 people who now use it to track their symptoms and improve their daily lives. These are increases we are proud of and that make the decision to invest in additional fundraising streams worthwhile.

What numbers would mean the most to you? How do you think we should decide if an organization is meeting its mission and therefore worthy of our donations? We’d like to hear your thoughts. Help us help you to help others.

*About Kimberly

I am the Senior Director of Development at MSAA and have worked in the nonprofit arena for over 15 years. I love reading, running, theatre and the Green Bay Packers. I volunteer with the Disabled American Veterans teaching outdoor sports like skiing and kayaking to injured veterans and find that I receive much more from them than I am able to give.

Highlights from the 2014 American Academy of Neurology’s Annual Meeting

Posted on June 4, 2014 by MSAA

Please read MSAA’s article summarizing highlights from the American Academy of Neurology’s (AAN’s) 66^th Annual Meeting, which was held in Philadelphia and concluded in early May. Neurologists from around the world attended this exciting conference, where the latest findings in MS research and treatments were presented.

Topics highlighted in this article include:

Updates on approved treatments for MS
Study results on experimental treatments
Medications under investigation for progressive forms of MS
Pregnancy information for individuals taking disease-modifying therapies
and much more!

Read the full article on highlights from this year’s American Academy of Neurology’s (AAN’s) 66^th Annual Meeting

How do we know if we are doing a good job?

Posted on May 16, 2014 by MSAA

by Kimberly Goodrich, CFRE, Senior Director of Development*

As the debate continues around ratings, ratios, and watchdogs, nonprofits around the country are focused on how to accurately communicate their value. If ratings do not suitably portray the efficiency of an organization’s operations – then how do we know our dollars are being well spent? What is our impact?

Impact, in the nonprofit world, refers to the change in behavior that is a result of the activities and resources provided. For example, an organization provides a class and information on the health risks associated with smoking cigarettes, and finds that 42 percent of attendees stop smoking, resulting in higher scores on overall health measures at their next checkup. If their mission was to improve health scores by decreasing the number of smokers, then this organization can clearly state this as their impact.

MSAA’s mission is to be a leading resource for the MS community and improve lives today. But how do we measure improvement? And how much improvement is enough? In the previous example, if the smoking-cessation classes improved health scores by 50 percent, this sounds great, but what if they only improved by 5 percent…is that enough? If 5 percent kept that person from having a heart attack, would it then be enough?

The improvement of a life is not easily shown on a graph or a financial statement. Sometimes we need to hear the stories that accompany the percentages and the ratios, the revenues, and expenses. The stories that remind us why we do what we do.

“From the bottom of my heart, I thank you – all of you, for helping me to live independently [through MSAA’s free equipment distribution program]. I put my shoes on by myself!! It has been years since I have done that! Thank you for the leg lifter. It lifted my spirits too!” -F from South Carolina

This is not to say that numbers do not matter. Last year, 1,040,554 people accessed our website for information – 814,776 of them for the first time. That’s a significant number of people who can have their spirits lifted and their lives improved.

MSAA has been able to improve these lives because of an increase in the number of generous donors who support us in this mission. We are incredibly thankful for this growing number of people who, through their vital contributions, experience the joy of creating an impact – and improving lives today!

*About Kimberly

FOLLOW MSAA ON: