MS Humor, Maybe.

By Lauren Kovacs

Funny, not so funny. I know MS is really a mean demon. It tries to throw peanuts at you like a demented circus clown. I hate clowns.

Try and find humor in it, where you can.  Be silly.  Wear what you want, for example.  Try and do what makes your moment.  MS changes all day.

I can only wear certain sneakers. I like silly sneakers. Being in kids shoes, I wear whatever ones I like. The ones with lights are not yet in my closet. I have some dignity; however, I love my pink polka dot Chucks and my Sketchers with sparkles.

I do have some adult-restraint on apparel, but not too much. I wear only pull-on shorts/pants now. I kinda had a funeral for my button shorts/pants. Go crazy. There is little control with MS. Control your wardrobe. I am not saying wear big red floppy shoes and an orange wig, but have some fun.

Laugh at yourself. I fell at the doctor’s office recently. I jumped up and shouted, “I’m ok!” I didn’t really jump. I kind of slither up my walker. The only thing was a wee bump on my ego. Chocolate is great at ego repairs, too.

I once told a MRI technician that my lesions light up like a Christmas tree and I recommend he wear sunglasses. When he had to stick me eight times for the IV, I could not find any humor in that. I do not identify well as a pin cushion, and then spending almost two hours in a Pringles can they call a MRI was not funny.

Find humor in MS. Laughter is the best medicine, they say. I have to use a life vest in my own pool now. I call it buoy training. I have very little control in the water now. I would be a floating chicken nugget for a shark, if I was in the ocean.

MS can be very depressing. It is like MS jail. I had to turn in all my talents, before the life-long stay. Heck, I had to turn in my coordination, too. Trying to drink grapefruit juice out of a cup ended up on my face and in my hair. That hand earthquake left me with a burning eyeball. Make light of stuff.

Laugh off your quirks, when you can. If you laugh at yourself, it helps you and others move on. I know MS is mean and a thief. Making light of most MS incidents can help you not to dwell on the MS monster as much.

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Adding Up MS: Hey, What Does That Number Mean?

Two doctors looking at brain MRI

Did you know that estimates indicate that as many as 2.5 million individuals across the world may be living with MS currently? MS is generally referenced as a “rare” disease, but that number doesn’t seem small to me!

Where you are living in the world will determine a number of factors, including what diagnostic tools are available to accurately evaluate and diagnose a person with MS. After all, those figures might be harder to estimate in countries that do not have trained neurologists, MRI equipment, and other supportive medical testing. If people are not diagnosed or seeking medical care, then they are unlikely to be “counted” or projected into estimates.

Another major challenge is that many countries – including the United States – do not have an official MS Registry, which is a legislated or mandatory accounting of each person diagnosed with a particular condition within a particular country (or other geographic area such as a state). Without a registry, scientists and epidemiologists must rely on other factors to try and “guestimate” how many people in any particular area may be diagnosed with MS. These types of disease registries do exist in the United States for other conditions, such as ALS (Lou Gehrig’s Disease).

Countries such as Denmark do maintain an MS registry. Since the 1950’s Denmark has collected specific information on anyone diagnosed with MS. This type of registry has provided Danish researchers and scientists of other countries valuable information for clinical research and prospective studies. Hopefully someday the United States legislature may agree that a national MS registry could bring many benefits to individuals living with MS.

So, when you see that 2.5 million number, think of all the people who don’t see a doctor because they can’t access one or cannot afford medical care. Think of all the people who are diagnosed with something else because their physicians don’t have appropriate diagnostic equipment. Yes, researchers have tried to extrapolate an “accurate” number, but who is being left out?

When I hear that figure, I think, what does that number really mean, and how does that number impact the MS community? Does the lack of a registry leave researchers without critical information which could be collected to better understand the MS process and who is diagnosed with MS? Is less funding spent on MS research, including causes, treatment options, and individual quality of life and well-being because MS is perceived as “rare”? These are questions that cannot be answered because the true number of people living with MS is unknown, but it is still important to pose the questions.

For more information regarding projected figures of individuals living with MS around the world see the Atlas of MS 2013.

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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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