Latest Issue of The Motivator Now Available

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.

Motivator digital

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

Motivator Winter Spring 2015

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!

 

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MSAA’s MS Research Update Now Available

Research_Update_2015_email_BUTTON1The 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.

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.

Read MSAA’s latest MS Research Update here.

 

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Communicating about Multiple Sclerosis with Young Children

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.

MommyStoryMSAA 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?

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Let Us Help You Help Others.

Help Sign Shows Lost In Labyrinth

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.

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


MSAA News Update
Please read MSAA’s article summarizing highlights from the American Academy of Neurology’s (AAN’s) 66th 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) 66th Annual Meeting

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

by Kimberly Goodrich, CFRE, Senior Director of Development*

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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

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.

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Latest Issue of The Motivator Now Available for the MS Community

savas2The Motivator is MSAA’s award-winning magazine provided to the MS community and to our generous supporters. Distributed twice per year, this publication addresses the physical, emotional, and social issues that arise with MS, and provides information and support to many individuals affected by this disorder.

We’re pleased to announce that the Winter/Spring 2014 issue of The Motivator is now available to read!

savas

Cover Story:
The Emotional and Psychological Symptoms of MS
… The symptoms of depression, anxiety, and pseudobulbar affect (PBA) are described, along with effective treatment strategies. Important information is also given on how these symptoms affect roles and relationships, sexual function, and self-image.
Read the full story

Feature Story:
…Competitive “biosimilar” drugs may soon be considered for approval. Read about how these “highly similar” drugs may affect procedure, treatment, and cost.
Read the full story

AquaticCenter-Screen

Program Notes:
…Details on MSAA’s new Swim for MS online Aquatic Center are highlighted. This national program initiative supports the awareness, understanding, and availability of swimming and aquatic exercise as a positive wellness opportunity for the MS community.
Read the full story

Read the latest issue of The Motivator

 

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Announcing MSAA’s New Online Aquatic Center

Online Aquatic Center

MSAA is pleased to unveil the Swim for MS online Aquatic Center at SwimForMS.org – an exciting new resource for individuals with MS and healthcare professionals.

Swimming and other forms of water-based exercise have well-established health benefits for many fitness levels. For people diagnosed with MS, the cooling and buoyant properties of water can create an ideal exercise environment allowing for movements that may not be possible on land, while keeping them from overheating. Research suggests that the benefits of water-based exercise for individuals with MS include improved flexibility, muscle strength, mobility function, psychological well-being, and overall quality of life.

The Swim for MS online Aquatic Center features resources developed to help you learn more about aquatic exercise, including the following sections:

• About Aquatic Exercise and MS – Comprehensive information about the benefits of aquatic exercise and how water-based activities can be adapted to fit all levels of ability Tip Sheetand types of MS
• Aquatic Resources – Tips and suggestions on how to begin an aquatic exercise program and where to find a pool in your area
• Multimedia Center – Inspirational videos of people living with MS who incorporate swimming and aquatic classes into their healthy lifestyle plan
• For Healthcare Professionals – Research findings and supportive information on aquatic exercise and MS for neurologists, physical therapists, rehab specialists, and aquatic fitness instructors

To learn more about aquatic exercise and MS, please visit our new online Aquatic Center at SwimForMS.org!

The Swim for MS online Aquatic Center has been developed through a collaborative sponsorship with Genzyme, a Sanofi company.

pool

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March is MS Awareness Month

The Multiple Sclerosis Association of America (MSAA) recognizes March as MS Awareness Month. Throughout the month, MSAA is raising awareness and improving lives today!

March MS Awareness Month calendar Graphic

MS Awareness Month is a great opportunity for everyone to learn more about multiple sclerosis and discover all the services and support MSAA offers. 

MSAA offers the following ways to learn and support the MS community:

  • Visit our website, mymsaa.org, which provides easy access to vital information, resources, and tools from your desktop, mobile phone, or tablet.
  • View any of our educational videos and webinars in our MSi Video Library ranging in topic from MS symptom management to understanding Medicare, and much more.
  • Read one of our publications, including MSAA’s award-winning magazine, The Motivator, and the recently published MS Research Update with the latest latest findings in MS treatments and research.
  • Attend one of MSAA’s educational events for people with MS and care partners – check our Calendar of Events to find upcoming programs happening in your area.
  • Check out MSAA’s 2014 Art Showcase, featuring creative and beautiful artwork by individuals with MS.

Help to spread MS awareness by using MSAA’s “March is MS Awareness Month” badge as your social media profile picture (right-click the image below, save it to your computer, then use it on your Facebook, Twitter, Google+, or LinkedIn account profile pictures). 

Also remember to use the hashtag #MSAwareness in your social media posts.

MSAA_month_badge3

We look forward to everyone learning more about MS during MS Awareness Month. And we greatly appreciate your continued support of our vital mission of improving lives today for the entire MS community.

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Self-Advocacy for People with Multiple Sclerosis

Different thoughts may come to mind when you hear the word ‘advocacy.’ Some may not be familiar with the term or others may have a very vivid description of what the word means to them. Advocacy can be defined as active support, pleading or arguing in favor of something or for some type of cause. Individuals advocate for themselves in different ways, sometimes without the knowledge that they’re engaging in self-advocacy. When you visit your doctor and ask questions, this is a form of self-advocacy. You are supporting your healthcare by requesting more information to make the best informed decisions you can regarding your care. Some individuals have others assist them with this task at times; family members, friends and caregivers have been known to advocate for care when involved in the healthcare process. Sometimes it’s helpful to have another voice or set of ears advocating for your health needs when interacting with your medical team, and there can be different forms of this advocacy presented.

Here are some ways the MSAA can help you remain an advocate in your healthcare:

  • My MS Manager™:  a mobile-phone application to track disease activity, store         medical information, generate reports, and assist individuals with their treatment      plan
  • MSAA’s S.E.A.R.C.H.™ Program:  tools to help individuals with learning about the approved long-term treatments for MS, along with questions to discuss with the patient’s medical team
  • My MS Resource Locator: an MS-specific, online database offering targeted information and unique support services, including detailed guides

What are some ways you advocate for your care?

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