Sunday, May 31, 2015

Lights, Camera, Take Action On MS



Last week I had a had the honor or speaking with Madeleine Stowe, actress and MS spokesperson for the "Lights, Camera, Take Action On MS" campaign with Genzyme. Madeleine made be better known to some of you as Victoria Grayson on ABC's popular tv show Revenge!

When Genzyme asked if I wanted to interview Madeleine on the phone to learn more about this event I was a bit shocked. . . me?! Really? What a cool opportunity, of course I want to interview Madeleine! She was so nice to talk to and so honest about her experiences growing up with her father who had MS. I think it is amazing that she is sharing such a personal part of her life and I love that she is an MS Activist!

In talking with Madeleine I learned that her father was diagnosed with MS prior to their being any disease modifying treatments and that his disease progressed rapidly. She shared that she has vivid memories of her childhood and while she didn't know anything different she remembers feeling a sense of guilt. Madeleine's father died in 1983 and while there wasn't a lot of hope for him during his life with MS there is SO much hope for people being diagnosed and living with MS today. That is what motivates Madeleine to be involved with these events today. She shared that whole families are coming, not just people with MS. She loves talking to the family members and caregivers too.

In addition to talking to Madeleine on the phone, Dr. Crayton, a neurologist in the DC area who will be speaking at the upcoming event in Las Vegas with Madeleine was also on the call. Dr. Crayton shared that community events like this are important to attend. She feels it is very important to "take action on MS" because incorporating other alternates to medications like massage, yoga, acupuncture, etc. are just as important. She talked about how she has so many patients who are managing their MS well and how MS really has changed so much since the days when Madeleine's father lived with it, thanks to treatment options.

Really at one point the three of us where chatting away like old friends! It was pretty funny how something like having a connection to MS in common (although all three of us for different reasons) can really connect you! I love that. After about 30 minutes or so we wrapped up our call and I felt so inspired to know that there two more amazing ladies advocating for MS!

A little more about the events. . . according to Genzyme, the goal of the events is to raise awareness of how to take action on MS by helping people learn more about topics ranging from managing stress to the physical and emotional aspects of living with the disease. Attendees will have the opportunity to meet Madeleine, hear more about her story, and learn from MS experts.

So far the events have taken place in Chicago, Orlando and Houston and they were so successful that three more cities have been added for June. Next up are Pittsburgh, Las Vegas and Atlanta! Go here to see specific dates and to register.

Visit TakeActionMS.com to see video highlights from attendees at previous events, who shared how and why they take action.

Who knows. . . maybe I'll get to attend a future event and give you a first person report about how amazing I hear they are! Or fingers crossed, Lights, Camera, Take Action On MS will come to Boston! If you attend one of the June events please let me know what you think!





This is not a sponsored post. I am not being paid to write this post. All opinions are my own. I was just grateful for the opportunity to speak with Madeleine and Dr. Crayton and to learn more about this event. I do not take a medication made by Genzyme nor do I have any affiliation with them.





 

still being molly

4 comments:

  1. What a great opportunity to talk to her and share experiences and learn more about the event.

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  2. That is so amazing to got to speak with her and learn more about the event. You totally should go to one of their events.

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  3. Wow what a cool opportunity to speak with them! I really hope you get to go to one of the events someday, sounds like it would be such a great experience.

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  4. Such a cool opportunity! My dad was diagnosed with MS over 20 years ago and only gets treatment at the VA Hospital and has never gotten any of the disease modifying drugs. Then I was diagnosed in 2009 and have tried several. There's a lot of guilt with that when the quality of life is dramatically different. Great blog post, Jodie!

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