week 21: this week i'm gonna... help find a cure for multiple sclerosis
In the mid-1980's, Joanne Roberts was living a full life - she was a respected senior scientist and professor at UNC Chapel Hill, a wife to a wonderful man, and a mother to two healthy boys. She was also the kind of person that never complained and always thought of others.
Joanne had started noticing some numbness and pins and needles in her legs. Then, on a family ski trip, she suddenly had trouble moving her legs. When she finally visited the doctor, she revealed she had been suffering some of these symptoms on-and-off for years. After undergoing many tests, Joanne was diagnosed with primary progressive multiple sclerosis in 1986.
After her diagnosis, Joanne continued to live her life as normally as possible. Her family notes that there were many times when they forgot she had a disease, despite the ongoing pain and complications she suffered. Her sons were virtually unaware that she was sick until they were in middle school, when her disease started a more aggressive progression.
Joanne was an intellectual force and pillar of strength. She continued to work every day up until her death in 2008, and was one of the most prolific researchers at the Frank Porter Graham Child Development Institute, with more than 125 publications in scholarly journals. She was always an active presence in the life of her boys, was a mentor to numerous students and postdoctoral fellows, and was deeply involved with her local Judea Reform Congregation.
In the last years of her life, Joanne and her husband, Barry, served on the Board of the Eastern Carolinas chapter of the National Multiple Sclerosis Society (Barry continued his service on the Board for some time following Joanne’s passing). Joanne saw first-hand how important it is for MS patients to have support and advocacy, and she hoped that her service on the Board would contribute toward finding a cure.
Joanne's sons, Justin and Matthew, are also involved with raising awareness and funds for MS research, and through their annual fundraisers have raised over $500,000 for the cause. The family continues to support the National MS Society and are extremely grateful for the care and sense of community that was given to Joanne during her fight with MS.
The National Multiple Sclerosis Society mobilizes people and resources so that everyone affected by multiple sclerosis can live their best lives as we stop MS in its tracks, restore what has been lost, and end MS forever. To fulfill this mission, the Society funds cutting-edge research, drives change through advocacy, facilitates professional education, collaborates with MS organizations around the world, and provides services designed to help people with MS and their families move their lives forward. In 2015 alone, through a comprehensive nationwide network, the Society devoted over $122 million to help more than one million individuals connect to the people, information and resources they need. To move closer to a world free of MS, the Society also invested $54 million to support more than 380 new and ongoing research projects around the world.
Despite the prevalence of multiple sclerosis, the disease is still very misunderstood. MS is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body. The cause of MS is still unknown – scientists believe the disease is triggered by an as-yet-unidentified environmental factor in a person who is genetically predisposed to respond.
The progress, severity and specific symptoms of MS in any one person cannot be predicted. Most people with MS are diagnosed between the ages of 20 and 50, with at least two to three times more women than men being diagnosed with the disease. Symptoms can vary widely from person to person, but some of the more common symptoms include fatigue, numbness/tingling, weakness, dizziness, vision problems, or pain, among many others.
Once diagnosed, there are four different disease courses that have been identified: clinically isolated syndrome (CIS), relapsing-remitting MS (RRMS), primary progressive MS (PPMS), and secondary progressive MS (SPMS). Treatments vary for each course, and no cure or prevention has been discovered for any of the variations of MS.
Notes for this week:
- World MS Day is May 25th.
- Our collective givetwig donation will help sponsor a range of vital services to help people with multiple sclerosis to live their best lives.
- For further information regarding the National MS Society, please check out their website.
this week i'm gonna donate to The National MS Society.