Rare neuro-immune disorders can affect anyone at any time. No effective treatments yet exist to restore myelin once it has been destroyed. The cause is unknown. There is currently no cure.
We believe that something can be done. If a broken mechanism can be mended, so can a disease. We have a purpose, one that takes all our commitment and determination. Because if there is a disease, research can find a way to fix it.
Rare neuro-immune disorders can affect anyone, but everyone can play a part in fighting back. Only research has the power to change the future.
For our 25th anniversary, we just ask you to do one thing: care
Well, that’s a bummer….
BECAUSE YOU SHOULD.
Rare neuro-immune disorders can affect anyone at anytime. They affect people of all ages. Approximately 25-30% are children, including under one year old. They destroy key components of the spinal cord, brain and/or optic nerve and lead to total paralysis in many of the people they afflict. They are similar to multiple sclerosis, but paralyze healthy people over a very short period of time – sometimes just 24 to 36 hours.
No effective treatments yet exist to restore myelin once it has been destroyed.
There currently is no cure.
You might think this will never happen to you… until it does.
What if it was your child, your spouse, your friend, your parent?
What if it was you?
Do you care now?
We believe that everyone has a role in improving the quality of life of people with rare neuro-immune disorders, including you. Join us in raising money and awareness and make our 25th Anniversary a year to remember for years and years to come. Help us raise the money that will accelerate and intensify research on all of these rare disorders and also grow our discipline so that more research is possible, and more people have access to good clinical care. We can’t do it without you.
Below are some ideas to help get you started. As always, if you have other great ideas, we’d love to hear them. Please contact us for more information and tell us how you plan to get involved.
Organize a 25-year Anniversary Walk-Run-N-Roll in your area
In 2018, there were five Walk-Run-N-Roll events organized by our members. This year we’d like to double that number. These events are a great way to raise awareness and funds, and to meet others. Last year, an average of 100 people registered for a Walk-Run-N-Roll. This year, we have our special 25-year branding ready to be showcased at your very own Walk-Run-N-Roll!
Host a restaurant fundraiser
As Barbara mentions in her post, hosting a restaurant fundraiser is a simpler way to get involved…and you don’t have to know someone who owns a restaurant. Groupraise is a great site that allows you to search by zip code for restaurants in your area that will give a percentage of sales to the TMA.
Ask a local business to donate a percentage of sales to the TMA
Speaking of local businesses…you don’t have to use a restaurant. Ask your yoga teacher, dry cleaner, or favorite retail shop to donate a portion of their sales on a certain day. Our friends at The Candle Lab in Pittsburgh, PA donated nearly $1000 last May as part of our Candles for a Cause event.
Organize a bake sale and a lemonade stand
From things that smell good to things that taste good: set up a bake sale at your work, church, or school. People are going to need a drink to wash down those delicious cookies. Do you have kids? Let them get involved and do an old-fashioned lemonade stand.
Set up a Casual Friday at work
No one likes wearing work clothes. Be the best friend of all your co-workers and plan a Casual Friday fundraiser. Each person who donates gets to dress down. TGIF indeed!
Create an online fundraiser
Two things that everyone has: Facebook and a birthday. Combine them and ask your friends to donate to the TMA in lieu of buying you a gift. These fundraisers are easy to do and make a big difference! Not a fan of Facebook? Or birthdays? Not to worry! You can always create a fundraiser through our website and share it with family and friends. Just as easy!
Get a pair
Donate $25 or more and we will give you a pair of the warmest, coolest, and most caring socks in town. Get your special pair of #caresocks now! This will not only make your feet look good, but also spread awareness about rare neuro-immune disorders!
Become a monthly supporter
Recognize this special 25-year anniversary of the TMA by making a commitment to make a monthly donation of $25 each month during the year. If you can afford $250 a month, that would get us even closer to helping us achieve our/your important goals. You will, of course, get a pair of #caresocks as a thank you. Become a monthly supporter today!
Share your story
Want to raise awareness or share positivity? Write your local newspaper’s health reporter and tell them your story. Or, become a TMA Hope Ambassador and help share a message of encouragement to our community. Submit your story and raise awareness!
Write or call your politicians
Take it a step further and write a local politician. Do you want to see better funding for healthcare? Is there a prescription drug bill that you are hoping will pass? Write or call your elected officials and tell them your story. And make sure to let us know about it!
Start an Awareness Day
Go a step further and get a day in honor of your diagnosis. Our Georgia Support Group Leader, Kim Harrison, is participating in her fourth Rare Disease Day in Atlanta. She’s also worked with the legislature to get February 15 to be Georgia TM Awareness Day.