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Nationwide tracking system for MS, other diseases will help advance research (Guest column)





















Rebecca Kuchar was diagnosed with multiple sclerosis at the age of 19.

I was 7 years old when I was invited to attend my first father-daughter dance, a rite of passage for many young girls. I remember standing in our living room, twirling in the new dress we had bought, feeling like a princess. That's when I was told we wouldn't be able to attend. My young mind could not comprehend why my father, who was living with secondary progressive multiple sclerosis, could not take me to the dance. To this day, tears fill my eyes as I picture the dance invitation and think about my own daughter attending her father-daughter dance.

My father's symptoms began in 1978, but with the lack of MRIs or therapies for MS, he went undiagnosed until 1983. In the early 1990's the first disease modifying therapy came onto the market, but the disease progressed quickly, and by 1996 he was using a wheelchair permanently. At the age of 19, just three years later, I experienced my first MS attack and I too heard the words, "You have MS," just like my dad had 43 years before me.

As the mother of a young daughter (with a second child on the way!) I can't help but wonder about the chances of her hearing those words from a doctor as well. Without any centralized data about the number and type of people like me around the country like who have MS, MS researchers have had trouble verifying whether MS is on the rise, and have difficulty following up potential leads to environmental or viral triggers that may increase chances of developing MS. This year, the U.S. House and U.S. Senate have introduced the Advancing Research for Neurological Diseases Act (H.R. 292/S. 849) which bridges the gap between data and research for diseases like MS. The neurological data bill will create a nationwide system for tracking the incidence and prevalence of neurological diseases, which could one day lead to a cure.

As we prepare to welcome our second child into the world, the words "multiple sclerosis" are constantly on my mind. But rather than letting fear take over – I'm becoming more passionate than ever about fighting this disease, finding new ways to advocate for change, and fundraising so that MS research is supported across the country. Will you join me?

Take action today by asking your U.S. Senators and U.S. Representative to support the advancement of MS research. By sending your action alert, your voice will be added to the over 4,000 MS activists who have already contacted Congress.


Story Source: The above story is based on materials provided by MLIVE
Note: Materials may be edited for content and length
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