A shared promise. At the Society’s National Conference in November, National MS Society President & CEO Cindy Zagieboylo delivered a moving speech focusing on the concept of a shared promise. Our promise is to create a world free of MS. What makes it a shared promise is that our movement is built on relationships among many different stakeholders, who each bring something unique and necessary to the table.
Those stakeholders include professional staff at chapter offices and the national headquarters, volunteers who support fundraising events and programs, leadership and skilled volunteers on chapter boards, the national board, and clinical advisory committees, plus fundraising event participants, donors, and corporate sponsors, and healthcare professionals and pharmaceutical and academic researchers. It’s a big team!
Having such a large team of players from so many different paths in life means that there are many different perspectives to balance as we move our mission forward. No one expects that everyone will agree all the time. The challenge is staying focused on our shared promise, and letting that goal be the guiding factor.
What’s most important is that we remember that creating a world free of MS is what we all want to achieve. Even though we might each have different circumstances and particular needs or ambitions, what we all want more than anything else is to end MS forever. To see our loved ones free of the disabling effects of multiple sclerosis, and not to worry that our child might one day hear a doctor say, “You have MS.”
Individual success is one of the great driving forces in our economy. Success often means competition and winning, and in the process receiving recognition and reward for our accomplishments. While those drives are important, it’s necessary to not let them control our behavior entirely. If recognition and reward are our only motivators, then it is easy to be discouraged and to abandon the cause when, for whatever reason, others don’t give us the acknowledgement that we deserve.
When the shared promise of creating a world free of MS is allowed to be the ultimate motivator, then the focus on achievement and success shifts away from personal recognition. The work becomes its own reward. We can feel good about ourselves because we know that we participated. We know that we added value to the process. We know that we played a part in the movement, whether it was riding 150 miles and raising $1,500, or volunteering at the registration table for the Annual Meeting, or contributing our skill and expertise to teach others. Doing the work, volunteering, raising money, talking to elected officials, it all makes a difference, and it should make you feel like you made a difference.
Join us as we move forward this spring with Walk MS, or any chapter activity, and enjoy the sense of fulfillment that comes from sharing our promise to help create a world free of MS.
President & CEO
FAMILY CONNECTIONS: When It’s Your Child
By Laurie Babbitt
Our journey with Multiple Sclerosis began over 13 years ago when our daughter Emily was just 10 years old. At this time, pediatric MS was not widely recognized and rarely diagnosed. Instead we were given a diagnosis of Acute Disseminated Encephalomyelitis (ADEM) with the assumption that this attack would be a onetime event in her life, in which she would fully recover with no long lasting effects. We felt very confident in this prognosis and had no doubt this would be just a memory in our lives. After repeated attacks in the next year and a half, she was unofficially diagnosed with MS. She began receiving Avonex to help control her disease. It was at this time, we began the slow realization that our daughter was living with a chronic disease that has no cure. We were still in denial that MS would negatively affect Emily’s life. As the years progressed, we saw the damage left behind by her multiple flares and tried to accept her new future. For many, a chronic illness like MS is life-changing, but it’s a change they can ultimately adapt to. Having a child with an aggressive form of MS is learning to accept that the dreams you have for your child are gone; and you mourn that loss.
This is the time it is so important to be able to reach out to others who are experiencing the same grief and fears. Your friends mean well by being there for you, but they cannot be expected to understand how this disease is always on your mind, even when your child looks well. We began to feel very alone and isolated in this journey. There did not seem to be anyone who could totally relate to the fears and reality we were now dealing with. As a caregiver to a child, your priorities are always her and her needs. In Emily’s case, she has lasting symptoms that require her to have 24 hour supervision. Not only has Emily’s life changed, but ours as well.
We have been very fortunate to find other families in our area who are also dealing with pediatric MS, thanks to our local chapter of the National MS Society. I will always remember our first meeting with other families as being the first time I could talk with people who “got it.” We shared the same fears of the unknown, dreams of a future for our kids, and the burdens of managing their MS. To know you are not alone in this battle makes a big difference. We have stayed close to these families over the years, seeing each other often. We often compare experiences with not only the medical issues our kids are experiencing, but also the challenges they are facing growing into their teens and early adult life with their MS always in the background.
In these days of social media and the internet, it is easier than ever to find other families experiencing pediatric MS. Many of the families I have met are not as lucky as we are and do not have others living close by that they can meet with. Facebook and MS web sites with chat rooms have been a lifeline for many. We have a great support family on Facebook who are always there to give a shoulder to lean on, to answer questions and to make you feel connected to others. It is so important to stay connected to others to share the good as well as the bad as we deal with our kids and their MS. Networking with other families in person or on line helps everyone better live their lives, especially when you are feeling overwhelmed with living daily with MS. We wish we had this opportunity to connect with other families when we started this journey, but are very grateful we have them in our lives now.
Victory in Medicare Settlement
By Marcella Durand
MS Activists Help Make
For years, Medicare’s so-called “Improvement Standard” denied coverage of certain treatment services to people with multiple sclerosis and other diseases. However, in October, a settlement to end the standard was reached in a nationwide lawsuit in which the National MS Society was a plaintiff. The Society joined other national organizations including the Parkinson’s Action Network, the Alzheimer’s Association, United Cerebral Palsy and Paralyzed Veterans of America in a class-action suit to challenge the Centers for Medicare and Medicaid Services (CMS) over the standard.
The standard denied Medicare coverage for services such as skilled nursing facilities, home health, and outpatient therapy benefits like physical or occupational therapy to Medicare beneficiaries living with MS if they did not show improvement. However, these often-expensive services can be critical to prevent decline or maximize independence. The standard actually violated Medicare’s own official regulations, which state that “the restoration potential of a patient is not the deciding factor” for coverage. The agreement to end the standard will vastly benefit people with MS and their families, helping place essential services back in their reach.
Once the settlement is approved by Chief Judge Christina Reiss of the U.S. District Court in Vermont, where the suit was filed, the standard’s use will effectively end. CMS will revise the Medicare Benefit Policy Manual so that coverage standards will instead be based on people’s need for skilled care, regardless whether they show improvement. In addition, CMS will conduct a nationwide educational campaign about the changes, which apply to Medicare and to private Medicare Advantage plans.
Marcella Durand is the content planning and development manager for the Society.