Tag Archives: Cure for MS

It is time for a cure for Multiple Sclerosis

Natural history data suggests that after ten years, 50% of untreated patients diagnosed with relapsing remitting Multiple Sclerosis will be categorized with secondary progressive Multiple Sclerosis. After 25 years, 95% will make the switch. People with MS are untreated for a variety of reasons. The reasons range from personal choice to treat the disease holistically and the fact that MS drugs can often be cost prohibitive, even with health insurance to the reality that MS drugs are not always effective or the side effects can be impossible to tolerate.

Ten years or twenty five years does not feel that far away. Just looking at the last 5 years, I know I will not be ready for my MS to progress anytime soon.

5 years ago I was not:

married

blogging

selling my photography

raising a teenager

knowingly living with MS

a homeowner

growing my own veggies

cycling

paddle surfing

in love with Yoga

planning to move to Mexico

launching a new website

donating $1,000,000 to research

thinking about where I would be five years from now….

We have something to offer the world in the next 10 years and the next 25 years. We cannot continue to rely on current MS therapies for long term success. There are too many variables and too many MS patients that need another alternative. We need a CURE for MS.

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In a nutshell

If you have ever cracked open a perfect walnut, you will understand why I love the phrase, “in a nutshell”. Everything is right where it should be, simple, a perfect fit.

So here it is, theRIDEproject in a nutshell….

A. I am going to donate $1,000,000 to the the Myelin Repair Foundation through photography sales of limited edition prints focusing on things that move. MS stops people from moving. TheRIDEproject stops MS.

B. therideproject.com will be live the beginning of September and will include: my blog (reinvented), more resources for you, information on the ride project bike team, how to join or start your own team and raise money for the MS Society.

C. I will be sharing new, really cool cycling images to start, with more images coming from the surfing, skiing, maybe even horseback riding world. Yes, you can buy these images or tell your cycling enthusiast friends about them.

D. You will be able to track how much money I dontate to the Myelin Repair Foundation and learn more about the organization and their research model and updates at the ride project website.

Questions you might have:

Why are you “reinventing” your blog? For almost three years I have written to you about ME, about MY diet, about MY MS, about MY relapses, MY struggles, MY successes.  Blogging has been invaluable to my MS journey and will continue to be an intergral part of my constant search for balance and wellness. I am so grateful that you have indulged me and connected with me. Thank you for picking me up when I was down, for challenging my ideas and supporting my crazy ways! Now, I want to give YOU things that you can take away and use in YOUR journey. I want to offer helpful information for MS patients and anyone that wants to live a healthier life. You don’t need an MS diagnosis or another disease to know that you are not healthy.

How will the ride project help to find a cure? By supporting an organization that takes a new approach to finding a cure. “The Myelin Repair Foundation is the only research organization that addresses every phase in the drug discovery process, from initial research all the way to licensing by commercial drug developers. This is the only way to ensure that promising research results in real patient treatments – in the shortest amount of time. We combine this holistic approach with our renowned scientific team and collaborative research model.” Read more at the Myelin Repair Foundation.

Tysabri works so well for you, do you really need “a cure”? Yes, I NEED a cure, You NEED a cure, and generations to come NEED a cure. When I was first diagnosed, I remember hearing, over and over again, “You are so lucky, 15 years ago, there wasn’t even treatment for MS”. I do feel lucky and so grateful that there are options to treat MS, and I thought that was enough but I want more. We deserve more!

What can I do to help make theRIDEproject a success? There are so many ways that you can help, but most immediately I need your input. Please, tell me what you think. Ask questions. Send great ideas. Challenge me. And, most importantly, be the cure you are waiting for.

theRIDEproject

I woke up at 1:30 a.m. and could not fall back asleep. It wasn’t steroids or some weird MS thing that kept me awake. It was excitement.  I usually sleep really well and don’t remember having this much crazy, can’t sleep happy, full of hope about the future excitement since the night before I married Mark.  Before that, the last time I was happy about being up in the night, I was pregnant, thinking about what it would be like to meet my new baby. (The baby is 14 now but I remember the feeling).

So what woke me up at 1:30 a.m. and kept me up until almost 3:30 a.m.? theRIDEproject. As I have been developing theRIDEproject, it has been growing and getting bigger and bigger. Too big? No way, I am up for the challenge.

I remember blogging the following, “Be the cure you are waiting for” and theRIDEproject takes that to a whole new level. Stay tuned to hear more about my commitment, the new website and how you can take part in something that is going to inspire change in finding a cure for Multiple Sclerosis and other neurological diseases.