MS Awareness Equals Donations
As many of you know, March is MS Awareness Month. It’s a full month dedicated to bringing awareness to Multiple Sclerosis. But how? How is this being done? What is being done in the world of MS to help spread awareness around the world about this horrible disease we live with on a daily basis? So many questions, for me at least, that I don’t have all the answers to.
Doing our part
I feel like we all need to do our part in trying to bring awareness to Multiple Sclerosis. Why? Because I feel that if there was more awareness and knowledge about MS, that this would cause more research to be done and also more discussion on it.
What do you see happening for MS Awareness Month? Any plans to help spread awareness just to bring the general public in the know of what so many people deal with day-to-day, on so many different levels.
Maybe people aren’t as familiar with MS because it’s so complex. There are 4 different stages of this disease. There isn’t a ‘textbook’ disease course. This is also why I like to call Multiple Sclerosis, “The Snowflake Disease”. There are no two individuals that are identical in their disease state, just like there are no two identical snowflakes.
I always wonder why there is only a ‘month’ that there is a big awareness campaign out there for MS, and many other diseases. Why can’t we have year-round awareness? Wouldn’t that be more efficient?
More than just donations
I have seen a few campaigns for MS Awareness Month out there previously, that were truly centered on bringing awareness to the disease. Bottom line, that was it, no other initiative in the campaign. There was no big flashing DONATE button blinding you with it’s bright colors, that your optic neuritis gets irritated by.
Did that ring a bell, that last statement? Do we need more funding for research to lead to a cure? Yes, absolutely, no doubt about it. But I also feel like there needs to be more to it than just DONATE NOW, with your standard MS definition, cause, symptoms, etc.
The intent of this article is not to ruffle any feathers; it is to speak my mind on the subject. As someone living with Multiple Sclerosis… I want to know what these donations will be contributing to. I don’t want to have to search for it, I just feel like I want to know more. There is no such thing as too much information, right?
Where does the money go?
Let me give an example of what I saw a lot of when Hurricane Harvey hit Texas. Everyone wanted to know where to donate his or her money. What was the best place to truly help those in need? Why do we even have to look at pros vs. cons list on where to donate to help people that literally lost everything? The reason is because when you are trying to give back to those in need, to really do what you can, you want to make sure that your donation is not going towards someone’s paycheck, instead of getting a child clothing since they lost everything they owned and their home.
I really, really hate even having to bring that up, because it’s just wrong. But it’s the truth. So much money was donated to Hurricane Harvey victims, yet there are still people, to this day, living in tents on the beach in Rockport, TX. Where did the money go?
Totally not trying to get off the subject, but I wanted to given an example that was very recent in my mind. With all of the money that is donated, how is it truly helping someone with MS. Are the donations going strictly to research? What about educational programs? What about medical equipment? What about Prescription Assistance?
The financial burden of having MS
Not only that but during MS Awareness Month, if you are asking for donations… targeting patients that have to not only deal with MS on a daily basis, but also have to deal with the financial burden of having MS in the first place. “Just a $5 donation can make a difference.” Oh, I know it can make a difference. It can make a difference on getting a medication that you absolutely need to function, or not.
Let me clarify that I’m not writing this looking for pity, or to upset anyone. I’m writing it in hopes that we can truly bring awareness to Multiple Sclerosis. To make a difference, we all need to fight as one.
Ideally, we could all band together. Patients, medical professionals, MS organizations, pharmaceutical companies should all have an understanding of what needs to be done with a plan of execution. What needs need to be addressed? What is the best way to raise money with the best outcome for patients in mind?
I don’t know if I have the answer to all of that right now, but I just feel like we need to open up the discussion. I'm not trying to belittle the efforts of those that run MS Awareness Campaigns, this is me asking for more info. How can we work together? I can honestly say that many people have brought this subject up to me numerous times.
I have a friend that has Multiple Sclerosis and I asked her opinion on this article. I had to share what she said in response after reading it over. “I understand that people need donations. But that's always the main focus it seems.”I’m not saying that getting donations isn’t important, I just want there to be more than subject lines of Donate Now.
Do you celebrate your MS Anniversary?