CDMRP & Respite Care...Support

The following email was sent to Congressman Tim Murphy

Please Support Funding for the Multiple Sclerosis CDMRP and Lifespan Respite Care Program in Fiscal Year 2017

Dear Congressman Murphy,

As an MS activist and your constituent, I urge you to sign on to two Dear Colleague letters supporting funding important to people affected by multiple sclerosis (MS):
(1) the Representatives Michael C. Burgess, MD (TX-26), and Tony Cardenas (CA-29) letter supporting $10 million for the Multiple Sclerosis Congressional Directed Medical Research Program (MS CDMRP) fiscal year FY 2017 deadline: March 10 and
(2) the Reps. Jim Langevin (RI-2) and Gregg Harper (MS-3) supporting $5 million for the Lifespan Respite Care Program deadline: March 21

The MS CDMRP funds innovative research that is complementary to research conducted by the National Institutes of Health (NIH). In the final FY 2016 budget, the MS CDMRP received $6 million (a $1 million increase over its FY 2015 level). More funding is needed--as less than 15% of research applications submitted to the MS CDMRP were able to be funded (on average) FY 2009-2014. To sign on to the Burgess-Cardenas MS CDMRP letter, please contact James.Decker@mail.house.gov (Rep. Burgess) or Jacqueline.Usyk@mail.house.gov (Rep. Cárdenas) by COB on Thursday, March 10.

While caregiving is essential and is the backbone of our nation's long-term care system it can be draining. A 2012 National Alliance for Caregiving (NAC) survey of individuals providing care to people living with MS showed that: 64% of caregivers were emotionally drained, 32% suffered from depression, and 22% had lost a job due to caregiving responsibilities. 66% said respite care would allow their care recipient to live at home longer.

Respite care offers professional short-term help to give family caregivers a break from the stress of providing care, and has been shown to provide family caregivers with the relief necessary to maintain their own health and bolster family stability. However, close to 90% of the nation's over 60 million family caregivers do not receive respite. Enacted in 2006, the Lifespan Respite Care Program provides grants to states to maximize existing resources and better coordinate and delivery quality respite services to family caregivers. This program has already provided grants to 33 states and the District of Columbia.

In the final FY 2016 budget, the Lifespan Respite Care Program received $3.36 million (a $1 million increase). I urge you to sign on to the Langevin-Harper Dear Colleague letter supporting $5 million for the Lifespan Respite Care Program in FY 2017 (which is in line with the President's FY 2017 budget request) by emailing todd.adams@mail.house.gov (Rep. Langevin) or scott.malvaney@mail.house.gov (Rep. Harper) by COB March 21.

2017 MS CDMRP

I sent the following email message to Congressman Tim Murphy (PA 18) today:

As an MS activist and your constituent, I urge you to join Representatives Michael C. Burgess, MD, (TX-26) and Tony Cardenas (CA-29) in requesting that the Multiple Sclerosis Congressional Directed Medical Research Program (MS CDMRP) be funded at $10 million in fiscal year 2017.

The peer-reviewed MS CDMRP funds innovative research that is complementary to that conducted by the NIH. MS research has the potential to help all people living with MS, including the more than 23,000 veterans who are treated for MS through the VA health system. A 2003 study in the Annals of Neurology identified 5,345 cases of MS among U.S. veterans that were deemed "service-connected." An advisory committee commissioned by the VA has recommended further study into the potential link between combat service and increased risk of developing MS.

Ninety-four bipartisan Representatives signed on to a FY 2016 Dear Colleague letter supporting $10 million for the MS CDMRP in FY 2016. In the final FY 2016 budget, the MS CDMRP received $6 million. More funding is needed--as less than 15% of research applications submitted to the MS CDMRP were able to be funded on average between FY 2009-2014.

I am a Vietnam Veteran. I had my first symptoms of Multiple Sclerosis 7-8 years after my discharge. I question why there was a significant increase of MS diagnosis in Kuwait after the first Gulf War. Something happened. What was it?

Please support funding the Multiple Sclerosis Congressionally Directed Medical Research Program at $10 million in fiscal year 2017 by signing on to the Reps. Burgess-Cardenas Dear Colleague letter. To sign on, please contact James Decker in Congressman Burgess's office at James.Decker@mail.house.gov or Jacky Usyk in Congressman Tony Cárdenas' office at Jacqueline.Usyk@mail.house.gov by COB on Thursday, March 10, 2016.

Sincerely,

Augustus d'Este 1794-1848

Sir Augustus Frederick  d'Este, Grandson of King George III is accepted to be the first recorded case of MS multiple sclerosis. His personal diary gives a vivid account of his own complaint, disseminated sclerosis, the clinical picture including transitory blindness and diplopia, absolute loss of power of locomotion followed by almost complete recovery, what followed later would be the gradual onset of paralegia, tremors, sphincter troubles and sensory symptoms. 
This description is the even more remarkable because the period covered in his diary, 1822 to 1846, is at least twenty years before any description comparable to this appeared in the medical press.

Among the observations Sir Augustus noted in his diary were:

• December 1822, I was obliged to have my letters read to me, and their answers written for me, as my eves were so attacked that when fixed upon minute objects indistinctness of vision was the consequence.
• Soon after I went to Ireland, and without anything having been done to my eyes, they completely recovered their strength and distinctness of vision.
• I sometimes saw imagined spots floating before my eyes. 
• January 1826 the most painful Chapter up to that period of my life occurred. I was beset by afflictions on all sides. My eyes were again attacked in the same manner as they had been in Scotland...my eyes again recovered. 
• In June 1827 I found my Mother in bad health at Lausanne; the heat of the country I found intolerable.
• My Mother and I traveled to Venice. To my surprise I there one day found a torpor (Inability to see clearly in dim light) or indistinctness of feeling about the Temple of my left eye.
• About the 6th of November the malady increased to the extent of my seeing all objects double. Each eye had its separate vision. -The Maladv of my eyes abated, I again saw all objects naturally in their single state.
• Now a new disease began to shew itself: every day I found gradually (by slow degrees) my strength leaving me: I could clearly perceive each succeeding day that I went up and down the staircase with greater difficulty. Numbness and want of sensation became apparent about the end of the Backbone and the Perineum.
• About the 4th of December mv strength of legs had quite left me, and twice in one day I fell down upon the floor...I was obliged to remain on the floor until my Servant came in and picked me up. stance; I was obliged to remain on the floor until my Servant came in and picked me up. I remained in this extreme state of weakness for about 21 days, during which period I fell down about 5 times (never fainting) from my legs not being strong enough to carry my body. I never once fainted or had any sort of fit. Debility, extreme debility was the only cause of my falling...December the 14th, 15th, and 16th 1827 I was at my greatest degree of weakness;
• December the 25th I was able to take a short walk, and on the 21st of January (1828) I was strong enough to begin a journey from Florence (where I was during my Illness) to Rome.-On the journey I was able to walk up some steep Hills. I rode out on horseback most days, and my strength gradually returned. I never was able to run so fast as formerly, nor could I venture to dance.
• June 19th, 1843. What I complain of now is numbness all down the back part of my Thighs and Legs, and when standing or walking I cannot keep my balance without a Stick.
• I sleep well when I am not annoyed with little nervous twitching in my Legs or Feet, which sometimes, but seldom, is the case.

Sir Augustus d'Este died in early 1846 at the age of 52.

I find it remarkable that this malady had not been observed prior to this yet 20 years later multiple sclerosis was recognized and it has assumed the following traits.

• It is more common in Northern and Southern latitudes.
• It is more common in persons of European descent.
• It affects more women then men.

Were there environmental triggers that Augustus d'Este and subsequent generations face that were and are different from previous generations?