News from June 2012
We recently came across a new device invented in northern California, which improves balance and mobility for patients with MS.
Visit the company website here: http://www.motiontherapeutics.com/
Demitrius Omphroy was diagnosed with MS at a young age, but he isnt letting it get the best of him. As second round draft pick in the MLS for the Toronto FC, it’s rare for a professional athlete to excel amid a debilitating illness such as multiple sclerosis. Despite having MS, Demitrius is using it as a motivator to work hard and continue to follow his dreams, one of those being music. He has such an inspirational, optimistic attitutde and living life to the fullest. On World MS Day, he came out with his first single release, “Speak It”, and he is helping raise MS awareness worldwide. He is an energetic MS advocate, and he is an extraordinary individual. Recently, he was a guest speaker at our 2012 MS Expo and Forum.Download his new single, “Speak It”, here!
We would like to introduce you to the incredible Caroline Kyriakou who inspires us with her dedication to spreading MS awareness and positive attitude! We are grateful to be able to share her amazing story with you:
First let me say how thrilled and honored I am to be featured for the Nancy Davis Foundation. I am so thankful for all Nancy Davis and her foundation do for all of us with MS and the awareness they bring to this disease.
Now, let me introduce myself. My name is Caroline Kyriakou, I am 32, am a lifelong Bostonian and was diagnosed with Multiple Sclerosis in 2006. I certainly have been on a bumpy journey since my diagnosis, but there have been a lot of positive experiences. I have a great support system starting with Abe, my husband, who is the ring leader. My family and friends also are very supportive. For the last 4 years I have participated in Boston’s Walk MS by leading Team Kaliope with Abe, my sister, Annie and friends. (Kaliope is my Greek name for those of you wondering.) I have been involved in awareness projects including the 2010 National MS Society Greater New England chapter’s video for MS Awareness Day and I was on FOX’s Boston morning show in 2009 for World MS Day talking about the MyMSYoga DVD along with yogi, Baron Baptiste. MyMSYoga is a free yoga DVD made especially for people with MS of all progressions that is available through the MS Active Source website. Within the last year I started volunteering for MS Active Source’s mentoring program. I really have enjoyed being a positive influence in people’s lives. I also started two online support groups. One through the 29 Gifts website called “Givers Who Have Multiple Sclerosis.” 29 Gifts is a book written by Cami Walker who has MS and she has started a social media website where “givers” can communicate. The other group I started is on Facebook and is called “Friends Against the MonSter.” Most recently I started blogging for MSRelief.com which has been a lot of fun and I am so glad to be creating awareness for MS. This prompted me to start a Facebook page for myself as a writer. This has become a passion of mine and have done all that I can to spread MS awareness.
When I was first diagnosed, I was scared. I was 26, didn’t know what MS was and had no idea what my life would be like after hearing those 3 powerful words: “You have MS.” After getting over the initial shock, I knew I wanted to start a therapy as soon as possible. I was disappointed that the only therapies available were injectables. My neurologist and I decided on Avonex, a once a week intermusclar injection. I quickly learned I had a fear of needles. I had gotten shots at my doctor’s office before and have a few tattoos, but this was different. I already knew there was no way I could inject myself so Abe volunteered. At first, it wasn’t easy. Right when Abe would get to the “1” in the countdown I requested before the injection, I would swat my hand at him that I wasn’t ready and needed more time. He told me I had to get the shot, so I might as well get it over with. It sounded reasonable, but fear over took my body. I don’t know how long it took, but eventually I had the shot. Quite a few weeks were like this. My doctor prescribed something to help me relax and I started to have a glass of wine, neither of which helped that much. Eventually I learned of a prescription numbing cream called Emla. The cream made all the difference in the world! Once I started using the cream, my weekly shot became so much more bearable!
I switched my MS therapy to Tysabri in 2008. I had been on Avonex for a year and a half and finally had found somewhat of a routine with the weekly shots. After getting MRI results, my neurologist informed me that Avonex was no longer working for me. I had a couple options, the ones I was considering were Copaxone, a daily injection or Tysabri, a monthly infusion. I was fairly certain that I would go with Tysabri, just because of my needle phobia. I really couldn’t see myself getting a shot every day. Also, I didn’t want to have to depend on Abe or anyone else for them as I knew I wouldn’t be able to give myself the injections.
I was a little nervous about starting on Tysabri because of PML, a rare brain infection that can leave you in vegetative state or be fatal. My neurologist informed me that I would be closely monitored. I felt comfortable with the decision to start Tysabri and scheduled my first infusion. I have now been on Tysabri for over 4 years. I am so thankful I made this choice. Within the last few years there has been a blood test that can detect if you have been exposed to the JC Virus, which puts you at risk for PML. The last two years I have tested negative. For me, Tysabri has worked so well. Not only is my quality of life been better because I no longer have to worry about shots (as soon as the shot was over, I started having anxiety about the next shot) but I haven’t had a relapse since my first infusion!
MS has led me to some really positive things in my life, friends being at the top of the list. Without MS I never would have met a whole circle of friends, some with MS and some without, that I cherish. MS has also reinforced my appreciation of life. As much as MS sucks, it is a very livable disease and I intend to live my life to the fullest! “I may have MS, but MS doesn’t have me” is quote I will never get tired of hearing. They are definitely words I try to live by!
Click here and check out Caroline’s Facebook Page!
Jack Osbourne was recently diagnosed with multiple sclerosis. Jack was diagnosed after experiencing a frightening episode, where he lost 60% of the vision in his right eye.
At such a young age of 26, Jack Osbourne was shocked and angered at first, but he has decided to have a positive outlook and raise MS awareness. He has the support of his wonderul, loving family, fans, and the MS community and foundation are here to support him! He is such an incredible man, and he has so much strength! His new, positive outlook on his diagnosis is inspirational, “adapt and overcome”!
Nancy Davis said a few words on Daybreak this morning about Jack Osbourne’s diagnosis, check it out here!
Los Angeles, CA – May 19, 2011 – On Friday, May 18, host, MS survivor and advocate Nancy Davis welcomed guests to the Hyatt Regency Century Plaza for the 19th Annual Race to Erase MS themed “Glam Rock to Erase MS.” The event raised $1.8 million to benefit the Nancy Davis Foundation for Multiple Sclerosis and its Center Without Walls program which continues to raise funds in order to provide treatment and ultimately find a cure for MS. In addition to the $1.8 million raised this year, the Nancy Davis Foundation for Multiple Sclerosis has raised $23,519,888 in contributions since 1999, and has funded MS research grants and programs totaling $18,510,805.
Celebrity guests at this year’s event included host Nancy Davis, honorees Teri Garr and Deb & Bill MacMillan, presenters Marg Helgenberger, Cybill Shepherd, Khloe Kardashian-Odom and Lamar Odom, Shaun Robinson and Jason Kennedy, performers Stevie Wonder, Fitz and The Tantrums, David Cook and The Tenors, along with guests Taylor Armstrong, Spencer Boldman, Lacey Chabert, Taylor Dayne, Janice Dean, Diana DeGarmo, Zoey Deutch, Christine Devine, Francesca Eastwood, Carmen Electra, Shannon Elizabeth, Clementine Ford, Camille Grammer, Maddie Hasson, Taylor Hicks, LaToya Jackson, Kendall Jenner, Kylie Jenner, Avan Jogia, Robert Knepper, Jon Lovitz, Camilla Luddington, Jacob Lusk, Jonathan “Lil J” McDaniel, Wendi McLendon-Covey, Jack Osbourne, David Osmond, Kalia Prescott, Megyn Price, Shawn Pyfrom, Quddus, Kim Richards, Bobbie Riley, Deja Riley, Taja Riley, Evan Ross, Catt Sadler, Anjelica Salem, Cassie Scerbo, Charlie Sheen, Antonique Smith, Lea Thompson, Pia Toscano, Anna Trebunskaya, Mayra Veronica, Clay Walker, Ace Young, among others.
Marg Helgenberger and Nancy Davis
Shannon Elizabeth walking in the fashion show
The 19th Annual Race to Erase MS opened with an exciting celebrity fashion show featuring styles from the Andy Hilfiger Andrew Charles Rock ‘N’ Roll Collection in addition to a presentation of the debut collection Authentic Icon, inspired by American Idol. The celebrity fashion show models included Spencer Boldman, Diana DeGarmo, Shannon Elizabeth, Clementine Ford, Maddie Hasson, Taylor Hicks, Kendall Jenner, Kylie Jenner, Josie Loren, Camilla Luddington, Jacob Lusk, Jonathan “Lil J” McDaniel, Wendi McLendon-Covey, David Osmond, Kalia Prescott, Megyn Price, The Riley Sisters (Taja Riley, Deja Riley, Bobbie Riley), Catt Sadler, Angelica Salem, Cassie Scerbo, Antonique Smith, Pia Toscano, Anna Trebunskaya and Ace Young.
The evening also included a live auction called by Shaun Robinson and Jason Kennedy, during which lucky bidders walked away with items such as a Live Fashion Week Package from the Mandarin Oriental, New York including a three-night stay in a Premier Central Park View Suite, round-trip business-class airfare, two spa treatments, tickets to the Tommy Hilfiger women’s fall fashion show and a $5,000 shopping spree at the Tommy Hilfiger 5th Avenue store, tickets to the Monique Lhuillier runway show and a $2,500 gift certificate for Monique Lhuillier Ready-to-Wear, two second-row tickets to the Badgley Mischka runway show and a $1,000 gift certificate redeemable for Badgley Mischka merchandise, and a special preview appointment to see Kathy Hilton’s new collection of luxurious ready-to-wear dresses before they hit department stores; a five-night-stay stay for the winner and seven friends at the glorious Vomo Private Island Resort in Fiji, including a snorkel trip to Vomo Lai Lai, private dinner at The Rocks Beach, and an entertaining Lovo night featuring a traditional Fijian buffet, dances, songs and torch lighting ceremony; an amazing one-week charter on a gorgeous yacht; a shopping spree with Paris and Nicky Hilton, as well as other amazing packages.
Jason Kennedy with Pia Toscano, Jacob Lusk, Ace Young and Diana DeGarmo onstage during the live auction
Race to Erase MS once again hosted a variety of musical performances throughout the evening. American indie pop band Fitz and The Tantrums opened the show performing hits “Don’t Gotta Work It Out,” “L.O.V.,” a cover of “Sweet Dreams”, and “Money Grabber.” American Idol winner David Cook followed with an energetic set including “The Last Song I’ll Write for You,” “Light On,” and a cover of Led Zeppelin’s “Rock and Roll.” Guests then enjoyed a performance by vocal quartet The Tenors who a two-song set including a cover of Leonard Cohen’s “Hallelujah.” Lastly, Grammy Award-winning artist and musical icon Stevie Wonder closed out the show singing a six-song set which included hits “Come Let Me Make Your Love Come Down,” “Higher Ground,” “Easy On Yourself,” “Isn’t She Lovely,” “Superstition,” and, in Race to Erase MS tradition, a rendition of “Lean On Me,” during which he invited all of the evening’s performers to join him on stage.
Fitz and The Tantrums
Guests couldn’t leave without picking up the coveted Race to Erase MS gift bag, enjoying such items as makeup from Laura Geller, certificates to The Bar Method of Los Angeles, nail polish from Essie and OPI, KM Fantasy candles, hair products from Nick Chavez and Cristophe salons, and gift certificates to Massage LA, to name a few.
The evening was sponsored by EMD Serono, Hyatt Regency Century Plaza, Associated Television International and American Airlines.
The Nancy Davis Foundation for Multiple Sclerosis is dedicated to the treatment and ultimate cure for MS. Funding research is the core focus of the Foundation and significant strides have been made to find the cause and cure of this debilitating disease. All funds raised support “The Nancy Davis Center Without Walls” program, a unique collaboration of the world’s leading MS research scientists currently representing Harvard, Yale, University of Southern California, Oregon Health Science University, UC San Francisco and Johns Hopkins. This nationwide collaboration of physicians, scientists and clinicians are on the cutting-edge of innovative research and therapeutic approaches to treat MS. It is the hope of the Foundation that in addition to combating MS through research in a clinical environment, awareness will be created by educating the public about this mysterious disease.
Th 2011-2012 Virtual Race to Erase MS raised $4,307, which goes to support our Center Without Walls Program, doctors working together on cutting edge research and treatments to find a cure for MS! Thank you to everyone for being part of the cure and helping us erase MS!The 2012-2013 Virtual Race is going to kick off this coming August! People from all over the world can register online, create a fundraising goal, and help us fundraise to support MS research and create MS awareness! Prizes will be given along the way and there will be a chance to win tickets to our 2013 Race to Erase MS Gala, which you wont want to miss since its going to be our 20th Anniversary!
2012 Race to Erase MS Gala – “Lean on Me” Performance 5/18/12
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