News from August 2013
You’re invited to a special national event for people with relapsing MS and their care partners. The event will feature: a panel of national MS experts and patients, information about AUBAGIO, expert-led workshops, and opportunities to share experiences and hear from other members of the MS community. There is limited space available, so sign up today.
CJ Free Jewelry joined our Orange You Happy to Erase MS Orange Campaign two years ago and they created a limited edition orange charity bracelet to support MS awareness and research. 20% of the proceeds benefit the Race to Erase MS, and CJ Free has had some wonderful support from celebrities who have purchased and worn the MS charity bracelet! Recently Hilary Duff has been spotted rockin’ the orange bracelet:
Help us raise MS Awareness and support our Orange Campaign by purchasing the limited edition bracelet here: Multiple Sclerosis Bracelets Here
New York, NY – The Tisch MS Research Center of New York announced today that it has received Investigational New Drug (IND) approval from the Food and Drug Administration (FDA) to commence a Phase 1 trial using autologous neural stem cells in the treatment of multiple sclerosis (MS). MS is a chronic human autoimmune disease of the central nervous system that leads to myelin damage and neurodegeneration and affects approximately 2.1 million people worldwide.
“To my knowledge, this is the first FDA-approved stem cell trial in the United States to investigate direct injection of stem cells into the cerebrospinal fluid of MS patients, and represents an exciting advance in MS research and treatment,” said Dr. Saud A. Sadiq, Senior Research Scientist at Tisch MS Research Center of New York and the study’s principal investigator.
The groundbreaking study will investigate a regenerative strategy using stem cells harvested from the patient’s own bone marrow. These stem cells will be injected intrathecally (into the cerebrospinal fluid surrounding the spinal cord) in 20 participants who meet the inclusion criteria for the trial. This will be an open label safety and tolerability study. All study activities will be conducted at the Tisch MS Research Center and affiliated International Multiple Sclerosis Management Practice (IMSMP).
The clinical application of autologous neural progenitors in MS is the culmination of a decade of stem cell research conducted by a dedicated team of scientists headed by Dr. Sadiq and by Dr. Violaine Harris, Research Scientist at Tisch MS Research Center.
Preclinical testing found that the injection of these cells may decrease brain inflammation and promote myelin repair and/or neuroprotection. “This study exemplifies the Tisch MS Research Center’s dedication to translational research and provides a hope that established disability may be reversed in MS,” Dr. Sadiq noted.
Participants will undergo a single bone marrow collection procedure, from which mesenchymal stem cell-derived neural progenitor cells (MSC-NPs) will be isolated, expanded and tested prior to injection.
Participants will receive three rounds of injections at three month intervals. Safety and efficacy parameters will be evaluated in all participants through regular follow-up visits.
For more information on this study visit: www.tischms.org
ABOUT TISCH MS RESEARCH CENTER OF NEW YORK
For over twenty years, Dr. Saud A. Sadiq has believed that combining excellence in clinical care with innovative research targeted at finding the cure for multiple sclerosis would set an exemplary standard in the treatment of MS patients. Today, the Tisch MS Research Center of New York embodies this new model of healthcare, in which your doctor is also your researcher. Dr. Sadiq helps those with MS by conducting cutting-edge, patient-based research to ensure unparalleled care. The close relationship of the non-profit research center and its affiliated clinical practice (International Multiple Sclerosis Management Practice) enables the testing of new MS treatments and accelerates the pace at which research discoveries move from lab bench to bedside. The Tisch MS Research Center of New York aims to identify the disease trigger, optimize treatments for patients, and repair the damage caused by multiple sclerosis.
DoSomething.org has honored the nation’s best young world-changers, 25 and under. Do Something Award nominees and winners represent the pivotal “do-ers” in their field, cause, or issue. On July 31st, 2013 Kelly Osbourne was honored and awarded for her incredible work with the Race to Erase MS and all she is doing to raise awareness for multiple sclerosis!
Honored for her work that she does with the Race to Erase MS
On the Red Carpet wearing Nancy Davis’s Peace and Love Jewelry Collection
Check out the video of Kelly’s speech from the Do Something Awards
Kristie Salerno Kent, a multiple sclerosis patient advocate, singer and songwriter, award-winning filmmaker and mother of two has just released her first book, “Dreams: My Journey with Multiple Sclerosis.” A free download is available at www.DreamsTheEbook.com. Kristie is a paid spokesperson for Acorda Therapeutics®, Inc.
At seven years old I absolutely knew what I wanted to do with my life: become a performer and maybe head for Broadway! A basement renovation in our home provided enough open space for my first stage, and I loved performing for my family. I’d sing at the top of my lungs and dance my heart out.
When I was 18 I entered Syracuse University’s musical theatre program with my dream of Broadway still in sight. But when I took classes in ballet and modern dance my coordination was not as strong and precise as it needed to be, and I could not figure out why. At times my head felt clouded, almost like it was filled with cotton. Even though agencies in New York were giving me a chance to audition, I was physically unable to perform.
I eventually put my Broadway dreams on hold and moved to Atlanta with my high school sweetheart, Michael. Soon after he proposed, and we started to plan for our wedding and our life together as a married couple. That’s when I noticed that my legs were becoming numb and I was experiencing a pins-and-needles sensation in my feet. I had heard people talk about getting cold feet before marriage, but they didn’t mean literally, did they? I went to see the doctor and an MRI test confirmed I was living with multiple sclerosis (MS). I was overwhelmed with feelings of fear, panic and denial. How was I going to get through this?
In spite of my diagnosis, I kept trying to pretend everything was “normal.” I was such a good actress that even Michael, the person closest to me, rarely noticed my efforts to hide problems with my walking and coordination. I didn’t talk to anyone about my symptoms because they were too difficult to explain. But with this news I thought my dreams of performing were over forever. A few years later, I had an unexpected opportunity to perform with a local producer/songwriter. The lyrics talked about doing what makes you happy, and following your dreams no matter how many challenges you face. I fought my fears and sang like I had nothing to lose, and the feeling was amazing. It was the push I needed to re-ignite my passion for music. I went on to record my first album, “Believe.” I also wrote and directed a short film, “The Show Must Go On,” to help others understand what it is like to live with MS.
I found that when my heart was opened once again by my love for music, it freed my mind as well. I was less afraid – and more focused on what I could do. I realized that denial was holding me back and decided to educate myself about MS. I saw how much I could still accomplish. Instead of avoiding my doctor, I started to listen to him about treatment options that could help me protect my health. I also got more involved with MS organizations. Most importantly, I found the confidence to conquer my biggest dream of all: becoming a mom. Michael and I now have a son, Kingston, and a daughter, Giabella.
I wrote “Dreams: My Journey with Multiple Sclerosis” to encourage people living with this disease to use their passion to overcome denial and help others understand the impact of MS. I hope that this story will help others on their journey with MS. Download a free copy here for you or someone you know who needs help getting started on their dreams.
Winter MS Forum Dec 8th 1 PM – 3PM
Hyatt Regency Century Plaza
Come join us for our special Winter Forum on December 8, 2013. The agenda will be announced in coming weeks. The MS Forum is an open forum discussion with the most prominent and leading multiple sclerosis research scientists from our Center Without Walls program. The event is free and open to the public.
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