Live – From The Orange Carpet . . .

 

Sharon Osbourne, Kathy Reagan Young, Nancy Davis, Jack Osbourne

Here I am – hanging with my new besties – Sharon, Nancy and Jack!!

Did you know that medical funding is extremely competitive – for grant money and straight donation?  That means that a scientist in Budapest might have a piece of the puzzle that would fit perfectly with a scientist’s piece of puzzle in Switzerland, but they’re guarding their pieces instead of sharing for fear of losing their funding.  Put those pieces together – and we may have a cure.  That’s what The Center Without Walls is doing.  This is a consortium of doctors brought together by the Race to Erase MS folks.  They provide support that has permitted the medical community to link together multidisciplinary scientific programs and expertise across the country to advance the understanding of the cause of MS and to develop new treatments. The Center is a break-through success because of the vision, insight and flexibility of these extraordinary doctors. LOVE IT!!  The Center’s network of the top MS institutions that have established leading, innovative research programs currently include Cedars-Sinai, UC San Francisco, Harvard, Yale, USC, Johns Hopkins, and Oregon Health Sciences University.  How’s that for impressive??  Smart, thinky doctors working on behalf of all of us.  They don’t have to worry about the money – or being secretive or proprietary with their research:  the foundation provides the researchers the money – freeing them up to just find the cure!!  In addition to the regular use of high-technology communication tools, researchers of CWW are required to come together to share scientific accomplishments through monthly telephone conference calls, standard scientific advisory meetings and MS symposiums held four times a year.  Such a smart way to provide a cooperative environment to push forward our quest for a cure.

The foundation provides the research money – but who supplies the foundation with the money?  Anyone interested in finding a cure!  I assume that includes each of us.  My husband, the ladies golf association and myself have hosted a golf tournament the last 2 years and raised money that we’ve then donated to The Center Without Walls.  I’ve also utilized their DIY program to simply email and ask friends and family to donate in my honor.  They make it very easy – and worth your time:  they have a wonderful program where you can win prizes based on various levels of fundraising.  Please check it out at the Virtual Race to Erase MS.  They have a HUGE, star-studded gala in Los Angeles each year and you could win tickets to that gala (tickets are $1000 per ticket)!!  I went last year – and I’m going again this year.  There’s an MS medical forum the next day with the doctors from the Center Without Walls to discuss all that happening in the world of MS.  It’s fascinating and you can meet and greet with the docs too.

Sir Elton John at the Race to Erase MS fundraiser

Sir Elton John himself!!

Taio Cruz at the Race to Erase MS fundraiser

Taio Cruz in the house!!

Sharon, Osbourne, Jack Osbourne, Nancy Davis and Kelly Osbourne

Sharon & Jack Osbourne, Nancy Davis and Kelly Osbourne and me – well – somebody had to take the picture!

 

They’re not breathing a word of the entertainment this year – but I can tell you who was there last year:  ELTON JOHN!!  Unbelievable.  There were maybe 1200 people there.  It was truly a very intimate concert by – ELTON JOHN!!  And Taio Cruise.  And Rod Stewart was there.  And Ziggy Marley.  And Sharon, Kelly and Jack Osbourne were there.  The incredible list goes on and on.  Go to the Virtual Race to Erase MS to see a list of all of the performers and stars that were at each of the past events.  And then click on “Virtual Race Registration” and sign up to help put money in the hands of these incredible research scientists to find a cure for us all – AND – win prizes along the way.  Sign up and send me an email telling me you signed up and I’ll be your personal coach – helping with creative fundraising ideas and motivation along the way.   I hope to hear from you soon and see you on the orange carpet in Los Angeles on May 2nd!

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10 Responses to “Live – From The Orange Carpet . . .”

  1. Shan Smilanich Says:

    Fantastic what they do, and what you do to bring awareness. Thanks Kath!!

    Reply

  2. Lisa Decroo Says:

    way to go Kath…so proud of you, you are an inspiration to all MS sufferers…glad to call you cousin…xoxo

    Reply

  3. Phil Fidandis Says:

    I rarely send a reply to anything, but I felt that this was now the time to do so. Kathy Reagan Young has dedicated her heart and soul to continue the fight against MS. This disease has affected so many. Some of whom have the resources to donate and support the cause with their wealth. (That is a good thing)!
    Kathy and I were friends in High School some 30 years ago. As it happens, we lost contact with others over the years. I have recently reconnected my friendship with her, and for that I am blessed. I did not know about her diagnosis until a few years ago. Kathy has dedicated her life to finding a cure for this disease. I pray that one day a cure will be discovered.
    Until then, as Kathy states: FUMS!

    Reply

  4. Erin Smilanich Says:

    Thank you for sharing this! It’s wonderful information and teaching me about this amazing organization! Keep up the great work you are doing. You may not realize it but it makes a difference. Every word.

    Reply

  5. Erin Says:

    awesome event- you e an inspiration Kathy!

    Reply

  6. Karen Says:

    Kathy, you are an inspiration and an advocate to so many. I recently met a friend of my sister, who also has MS, and suggested she contact you. I hope she did. In addition to being an inspiration and an advocate, you are amazing. Thank you for what you do. I love reading about the Center Without Walls. Good stuff….really good stuff.

    Reply

  7. Lauren K Says:

    Whatever you touch you give your whole heart and you make it better!!

    Reply

  8. Mitch Says:

    Great post Kathy! Ensuring that research institutions are working together to bring synergy to find a cure is crucial to increase the pace of progress!

    Reply

  9. Karin Bosela Says:

    I am sure that for many this is a great thing but let me just mention a few things I have learned over the past 3 years while suffering with primary progressive MS. 98% of the research being done for MS is for the remitting relapsing form and those of us with PPMS are once again forgotten about. I know this because I have contacted numerous MS agencies that contribute money for MS research and have asked one simple question. “When donating money to researchers for a cure for MS do you require that they research for all forms of MS?” The answer is always “NO” hence making me very resentful. There are more than 30 drugs on the market for remitting relapsing MS patients and not a single one for my PPMS. The FDA won’t allow stem cell therapy for me, Medicare won’t cover CAM therapies to help with my symptoms and my neurologist not only told me that there is no treatment for me … but that I should see a psychologist to just accept my disease. In other words I need to see a shrink to convince me that there is no reason to hope or have any will to live. It has been 593 years since the first signs of MS and we are no closer to a cure now than we were then because of corruption, big pharma, government interference and doctors that refuse to think outside the box.

    Reply

    • admin Says:

      Hey Karin — I’m so sorry that you’ve dealt with all that you’ve dealt with and additionally feel “forgotten” or “left out” when it comes to research over the years. Just this week I posted about something for SPMS. Here’s the link: http://bionews-tx.com/news/2014/01/27/multiple-sclerosis-treatment-derivced-from-acne-bacteria/

      I try to post on Facebook anything in the pipeline for any of the “categories” of MS. You’re right, however, that there’s MUCH more for the RRMS folks. Have you “Like” us over at http://www.Facebook.com/FUMSnow? Also – I’m considering sending weekly updates to our email list that will detail any updates regarding therapies, findings, warnings, etc. so be sure you’re signed up on our mailing list too (found on the top, right hand side of the landing page on this site (www.FUMSnow.com). Thanks for reaching out. Please stay in touch. FUMS.

      Reply

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