5.8.18 Advocacy Conference – SunnyStrong Needs Your Autograph

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Remember I told you Carlie and I are going to DC for the 2018 ALS Advocacy Conference? Remember here. 

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Y’all, excited is an understatement. We have a call this afternoon to discuss the trip so I looked through the agenda and packet for attendees. Get ready to get your share on, Carlie and I are about to blow up your social media, email, phones, and computers with all things ALS Awareness.

Before we go, I need you to do me a favor. 2018 Legislative Asks – Top Priority The following “asks” have already been made of every member of Congress.

  1. Cosponsor the ALS Disability Insurance Access Act (S.379/H.R.1171) to waive the five-month waiting period for patients with ALS before receiving benefits under Social Security Disability Insurance.
  2. Ensure at least $10 million in appropriations for the ALS Registry at the Centers for Disease Control (CDC).
  3. Ensure at least $10 million in funding for the Department of Defense’s (DOD) ALS Research Program.
  4. Support increased funding for the National Institutes of Health (NIH) in FY2019, especially the National Institute of Neurological Disorders and Stroke (NINDS)

I have included additional info from ALSA below. What I need YOU to do:

  1. Print and Sign Signature Pages
  2. Email back to me: sunny.brous@yahoo.com
    • I’ll respond to each email I get so if you don’t get a response from me, send it again
    • We’re too close to leaving for you to snail mail it, if you need to autograph and take a picture of it to text me – that works too!
  3. Get yourself an ice cream for completing your “good deed” for the day!
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I scream, You scream, Even Ian screams for Ice Cream!

How cool would it be for Carlie and I to show up in DC with 100 signed requests from SunnyStrong? Seriously, this favor will take you two seconds and will make a HUGE impact – Let’s show Capitol Hill what SunnyStrong is all about! You know ALS Sucks, I know ALS Sucks, let’s make sure Congress knows how much ALS Sucks!

More Details on 2018 Legislative Asks

ALS Disability Insurance Access Act (S.379/H.R.1171) – The Act continues to gather congressional momentum, and currently 25 Senators and 107 Representatives are cosponsors for the legislation. Members of Congress should cosponsor and pass S.379/H.R.1171. Contact Congressional champions: Senators Sheldon Whitehouse (D-RI) and Tom Cotton (R-AR) or Reps. Seth Moulton (D-MA) and Peter King (R-NY).

Fiscal Year 2019 (FY19) Appropriations Centers for Disease Control and Prevention – The president’s FY19 budget proposal eliminated funding for the National ALS Registry. It is now up to Congress to appropriate funding, and all members of Congress have been asked to support $10 million for the Registry for FY19.

  • House: A bipartisan group of 65 Representatives signed a “Dear Colleague” letter calling for $10 million for FY19 in funding for the National ALS Registry at CDC. The letter was spearheaded by Reps. Eliot L. Engel (D-NY) and Peter King (R-NY) and sent to the House Appropriations Subcommittee for Labor, Health and Human Services chaired by Tom Cole (ROK) and Ranking Member Rosa DeLauro (D-CT).
  • Senate: A bipartisan group of 12 Senators signed a “Dear Colleague” letter calling for $10 million for FY19 in funding for the National ALS Registry at CDC. The letter was spearheaded by Senators Bill Nelson (D-FL) and Bill Cassidy (R-LA) and sent to the Senate Appropriations Subcommittee for Labor, Health and Human Services chaired by Roy Blount (R-MO) and Ranking Member Patty Murray (D-WA).

Department of Defense – The ALS Research Program (ALSRP), and Congressionally Directed Medical Research Program, is not considered part of the DOD’s core mission, meaning it is not part of the president’s budget proposal and must be added through the annual appropriations process on top of the president’s budget proposal. Last year this program was almost eliminated by the Senate, and all members of Congress have been asked to support $10 million for the Registry for FY19.

  • House: A bipartisan group of more than 80 Representatives signed a Dear Colleague letter calling for $10 million in funding for the DOD ALSRP for fiscal year 2019 (FY19). The letter was spearheaded by Reps. Dave Reichert (R-WA), Joe Courtney (D-CT), Peter King (R-NY), and Seth Moulton (D-MA). The letter was sent to Defense Appropriations Subcommittee Chairman Kay Granger (R-TX) and Ranking Member Peter Visclosky (D-IN).
  • Senate: A bipartisan group of 13 Senators signed a Dear Colleague letter calling for $10 million in funding for the DOD ALSRP for fiscal year 2019 (FY19). The letter was spearheaded by Senators Bill Nelson (D-FL) and Bill Cassidy (R-LA). The letter was sent to Defense Appropriations Subcommittee Chairman Richard Shelby (R-AL) and Ranking Member Richard Durbin (D-IL).

National Institutes of Health – The president’s FY19 budget proposes $35.517 billion for NIH, including funding through the 21st Century Cures Act. All members of Congress have been asked to support at least $39.3 billion in FY19 funding to robustly fund the NIH.

  • Senate: A bipartisan group of Senators signed a “Dear Colleague” letter calling for robust funding for the NIH for FY19. The letter was spearheaded by Senators Bob Casey (D-PA) and Richard Burr (R-NC) and sent to the Senate Appropriations Subcommittee for Labor, Health and Human Services, chaired by Roy Blount (R-MO) and Ranking Member Patty Murray (DWA).

ALL of this info and more can be found at: http://www.alsa.org/advocacy/ 

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