It was a busy week for announcements in the media for new programs that will feature “big” names for some big name players in MS.
The first is the news that Brigham and Women’s Hospital in Boston will team with others to open the Ann Romney Center for
Neurologic Diseases in 2016. Romney and her husband Mitt – yes, those Romneys – have talked openly about her life with MS and they will lead a $50 million fund raising campaign this next year. I have not seen how much they personally donated, but the sum must have been significant to have the center named after her. The center will do research work on primarily five neurologic disorders: MS, ALS, Alzheimers, Parkinson’s and brain tumors. We all know there are over 2.2 million people worldwide who live with MS, but we are just a small part of the 50 million who live with all of these diseases combined; research for these is seriously underfunded and this commitment of resources is significant.
Other news from the Boston area came from the launch of new patient outreach initiatives by MS pharmaceutical companies Biogen Idec and Genzyme.
Biogen’s MS Blueprint™ features Gretchen Rubin as the celebrity spokesperson. Rubin authored The Happiness Project, a New York Times Bestseller, about living in the moment and allowing how we face each day shapes our future. She will be sharing tips and
From the Biogen Idec press release, “Much like my happiness project has allowed me to focus on the positive and bring more joy to my life, the MS Blueprint program is designed to do the same for the MS community,” said Gretchen Rubin. “I believe every small step—including the activities achieved through MS Blueprint—is a victory toward living a more enjoyable life. When you feel every day reflects how you want your life to be, that’s when you’re truly happiest.”
The release goes on to explain how the program will work. “By regularly visiting the MS Blueprint website, those impacted by MS can continue to set new goals, create new MS Blueprints, and contribute their suggestions for themes and activities they would like to see added to the site. In addition to the personalized activity plans, the website features frequently asked questions about living with MS, and a blog from Gretchen on how to incorporate happiness into your daily routine.”
I wonder if she developed the title of happiness expert during her years as a student at Yale Law School. Her bio from Wikipedia (yes, I hate to quote them but it was easily available ) reads: ‘Rubin received her undergraduate and law degrees from Yale University, was editor-in-chief of the Yale Law Journal and won the Edgar M. Cullen Prize. She clerked on the U.S. Supreme Court for Justice Sandra Day O’Connor and served as a chief adviser to Federal Communications Commission Chairman Reed Hundt. She has also been a lecturer at the Yale Law School and the Yale School of Management. She lives in New York City. She is the daughter-in-law of former US Treasury Secretary Robert Rubin.” It sounds like she has a lot to be happy about every day and could probably give some tips about finances.
I took a few minutes to explore MSBlueprint and found an easy to use site, surprisingly free of any advertisements for their MS drugs, and constructed a sample blueprint list for myself to see what the site it about. I’m not familiar with Rubin’s writings, but will soon be if I use this for a while, since it appears the helpful prompts and tips will be given in her blog.
The other program unveiled was Lights, Camera, Take Action on MS™, announced by Genzyme. Madeleine Stowe, the television and film actor, is at the center of this new campaign. I am not much into following the careers of people on the screen, so I didn’t know much about her. She grew up with her father who had MS, and I understand he died at a fairly young age over 20 years ago, in an era before the disease modifying therapies were available. She can talk from her own personal experience as a caregiver for a loved one who had this disease from that time.
Stowe, again quoting from Wikipedia – “appeared on stage and television in early career, before her breakthrough role in the 1987 crime-comedy film Stakeout. She later starred in films Revenge (1990) Unlawful Entry(1992), The Last of the Mohicans (1992), Blink (1993), Bad Girls (1994), 12 Monkeys (1995), The General’s Daughter (1999), and We Were Soldiers (2002).
Stowe had left the movie screen in 2003, and in later several years starred only in two made for television films. In 2011, she began starring as Victoria Grayson, the main antagonist of the ABC drama series Revenge. For performance in show she was nominated for a Golden Globe Award for Best Actress – Television Series Drama in 2012.”
Thanks to a promotional outreach from a marketing firm to bloggers to talk about this program, I was able to speak by phone with Dr. Ann Bass, the director of The Neurology Center of San Antonio and the lead neurologist for this program. Lights, Camera, Take Action on MS will be comprised of three live events held on different dates in Chicago, Orlando and Houston. The Chicago and Orlando events will also be available to view on the web and taped for on demand viewing at their website. Each of these events will last about two hours, and have a panel comprised of Stowe, Bass, other as yet unspecified medical lifestyle support people, and their patient ambassadors. I won’t be anywhere near any of these locations to attend the live program and will have to settle for the rerun.
The panel members will talk about their drug, of course, because that is required by the FDA laws governing contact with potential users of their drug. But Bass says the program will focus on more than just the Genzyme products and include mini-seminars that will offer information on ways to gain better health and be more active as people with MS. She is particularly excited to share the perspective Stowe will add to the caregivers’ side of this disease; this is a special group of people that does so much but continues to be in the background with little support or resources
I applaud these efforts to reach more people with MS through research and patient support programs. The patient programs come under criticism from many because ultimately the companies want to expose us to their particular product in the hopes we will use their therapy, but I find they can also provide valuable support, especially for the newly diagnosed. No one should criticize the efforts of the Romneys to give their valuable backing with their high profile support to an important project.
Like I said, Big Names are being used for these new programs and I hope that helps to generate Money, Motivation and Knowledge, all of which we could use more of.
Post Script - An addendum to this post on Friday afternoon 10/17: You can add Novartis to the mix of promotions using star power for MS campaigns. Novartis will unveil their program with David Osmond, of the Osmond family, next week. According to the Wall Street journal – ““I Can Do This,” the new music video from David Osmond of the musical Osmond family, has the clan’s trademark upbeat positive style, with images of men and women overcoming barriers and obstacles to reach a goal.” Clink on the link to view the video.
I guess we should stay tuned for who is next to bring on a ‘star’ to help us with our attitude toward life and activity. Four major programs unveiled in one week might be a record for the MS world.