A New Commission

Just as I felt led to do my singing missions tours, The Lord has put it on my heart to take on a new commission as District Activist Leader for the Nationl MS Society. Being diagnoesed in 2013 with Relapsing and Remitting Multiple Sclerosis, I felt that He was leading down another path for missions and this is where he has taken me so far.

On March 16th, 2016, along with 320 other MS activists, I headed to Capital Hill to meet with legilators in Washington DC.  The group I traveled with had 4 meetings that streched accross the Capital Hill Complex and filled most of my day.  Our requests were simple enough but instituting them could be hard in the volatile state the US congress was in. Once again, The Lord strengthened us and gave us resolve to present our requests with dignity and finesse.

Here is a list of what we are asking for the Fiscal Year 2017:

We are asking the Congressman to help us by:

• Calling for a hearing focusing on the patient perspective and our access to MS medications. Currently our medications can range from $30,000 – $240,000 a year and many patients have very high co-pays. Although they have medical coverage, it can be a decision to eat or take you medications.
• Cosponsoring the Advancing Research for Neurological Disease Act (H.R. 292). This would create a data collection system that will help researchers evaluate and understand factors related to neurological diseases like geographical clusters and variability and ethnic risks. I was born in 1975 and there has not been a data collection since 1975. That means that anyone under the age of 40 has not been included in the current data used to account for funding and healthcare for patients fighting MS.

• Providing at least $34.5 Billon for the National Institutes if Health (NIH) in Fiscal Year 2017. At our conference, Doctor Patrizia Casaccia from Mt. Sinai Hospital spoke of her studies and the progress they have made. Her lab has found that the myelin formation, which protects the nerve and is compromised by MS, can be increased causing the brain to fight back against our MS thus protecting the nerve from long term damage. With the Congressman’s support, we can continue to make progress finding a cure for MS. Here is a link to her website explaining some of her research findings  – http://neuroscience.mssm.edu/casaccia/

• Provide $10 Million for the Congressional Directed Medical Research Programs (CDMRP) Fiscal Year 2017 which providing a dedicated stream of federal funding for MS research which specifically encourages applications that address the needs of the MS community and concentrates on:
  • The biological basis of disease progression
  • Risk factors leading to the prevention of MS
  • Drug discovery
  • Biomarkers for preclinical detection of MS

The meeings were productive and by the end of the day, we felt confident that the legislators and legislative offices were on board with our requests. I also have several meeting sceduled with local legislators. I will keep you posted with any updates as they come to my attention.