JavaScript is required to run this application. Please enable JavaScript, then refresh this page.

Research Reform in the US needs your help! This could happen to any of us.

Share Link:
Category:Alzheimer's

Original Post

Dear Senators,

Mohammed Ali, Michael J. Fox, George H.W. Bush - Parkinson’s, Beau Biden, John McCain - Cancer, Lou Gehrig, Steve Gleason, Dwight Clark - ALS. This could happen to any of us. While you are addressing medical and tax reform it would only make sense to tackle research reform too. Today treatments and cures are far less than more. Clinical trials take too long, the FDA process needs to be streamlined and if a treatment or cure is approved the cost of the solution is astronomical in terms of the cost. Example: http://www.disabilityreports.org/article/stem-cell-clinics-are-advertising-their-treatments-as-clinical-trials-theyre-not.html

When a pharmaceutical company creates a treatment or best case a cure the cost of the solution is likely something most families could not afford. Example: A new treatment for ALS recently was approved by the FDA. Forbes estimates the new drug would extend the life of an individual between 3 to 5 months and it would cost $300,000. That’s a difficult decision to make even if you had the money. Source: http://www.the-scientist.com/?articles.view/articleNo/49365/title/Second-Ever-ALS-Drug-Approved/

Over the next 30 years we have an opportunity to conduct 2 decades of research within 1 decade if we streamline our research process in the US. This would lower the cost of healthcare in the future by developing treatments and cures faster. We need to invite every other country to conduct research with us in the US. This would make the US the #1 research capital in the world and in turn it would develop thousands of new jobs.

Technology will play a critical role in the development of new treatments and cures. IBM’s Watson and Microsoft have already shown the world what super computers are capable of and they will play a vital role in the future. Artificial Intelligence will also play a role in finding new treatments and cures. Some of these examples can be found here: http://www.disabilityreports.org/articles.php?id_types=19

With all of the charities you would think that more of your donation would go towards research, but likely it does not. “Of the 5,500 largest charities in America that depend on support from the public, our research shows that the typical charity spends 75% of its budget on programs, 10% on fundraising and 15% on administrative,” says Sandra Miniutti, Vice President, Marketing & CFO of Charity Navigator. Source: http://www.cnbc.com/id/40592354

Funding ideas:

We as a nation need to start to think about diseases as something we all need insurance to combat.

1.If all working individuals contributed $2.00 a month it would make a big difference;

2.In turn, during Tax Reform, if each business contributed an additional $2.00 per employee per month the investment would grow;

3.Then we should look at all of the charities that focus on a disease and require them to invest 30% of all fundraising to fund US research. Today the average is maybe 25%. If there is a windfall event, like with social media, the percent should be 75%. This would need to be committed to research within 1 calendar year.

Other funding ideas:

We tax 1 dime for every item listed below:

a.Per Soda
b.Per Alcoholic beverage
c.Per Cigarette
d.Per Joint/Marijuana

Millions of families are effected every year by some of the most deadly diseases. No family should have to lose all that they have worked for when they are faced with a deadly disease. We need to help them by making the cost of a care provider a 100% write off starting from dollar 1. Please help me make a difference. Example: http://www.disabilityreports.org/article/families-incur-largest-financial-burden-linked-to-dementia-care.html

Thank you for your time and consideration.

Sincerely,

Greg Tanner

Find your Senator: http://www.socialseer.com/resources/us-senator-twitter-accounts/

US Statistics

Of the estimated 5.5 million Americans living with Alzheimer's dementia in 2017, an estimated 5.3 million are age 65 and older and approximately 200,000 individuals are under age 65 and have younger-onset Alzheimer's. One in 10 people age 65 and older (10 percent) has Alzheimer's dementia.

ALS is a disorder that affects the function of nerves and muscles. Based on U.S. population studies, a little over 6,000 people in the U.S. are diagnosed with ALS each year. (That's 15 new cases a day.) It is estimated that as many as 20,000 Americans have the disease at any given time.

Parkinson's affects up to 1 million people in the U.S. Doctors diagnose as many as 60,000 new cases each year. Parkinson's strikes 50 percent more men than women. The average age of onset is 60.

More than 2.3 million people are affected by MS worldwide. Because the Centers for Disease Control and Prevention (CDC) does not require U.S. physicians to report new cases, and because symptoms can be completely invisible, the prevalence of MS in the U.S. can only be estimated.

Lifetime Risk of Developing Cancer: Approximately 39.0 percent of men and women will be diagnosed with cancer of any site at some point during their lifetime, based on 2011-2013 data. Prevalence of This Cancer: In 2013, there were an estimated 14,140,254 people living with cancer of any site in the United States.

Twitter Retweet List:

ALS, Lou Gehrig’s Disease, MND @alsassociation @alsadvocacy @ALSCanada @ALSTDI @ALSFamily @MDAnews @AnswerALS @StampOutMND @hopenowforals @carbajalphoto @momfrates ‏@TeamGleason @saritaapril @FightALSMonster @mndassoc @MndaSouth @claireMNDassoc @MNDPortsmouth @dukealsclinic @MNDA_Leics @mndVIPteam @RockOutALS @MNDManchester @mndresearch @ALSUntangled @DwightC87 @ktsALSfight @LesTurnerALS @Prize4Life @GreggBeratan @ALS_BC @temerityTM @KickALS @ProjectALSorg @ALSHF @MACAngelsNY @ALSMNDAlliance @ALSA_MidAmerica

Alzheimer’s @AlzNorCalNorNev @alzIllinois @AlzDemWeekly ‏@alzheimerssoc @CCP_AlzSoc @AlzCleveland @AlzheimersSTEP @ALZ_NWOhio @alzgmc @SandyAlz @ALZNebraska @DSWAdvocacy @alzheimersRI

Autism @Autism @autismspeaks @theautismnews @autismtoday

Parkinson’s @realmikefox @ParkinsonEastON @PunchParkinsons @parkinsonsnz
@StopParkinsons @ParkinsonsUK @MuhammadAli @GeorgeHWBush @TimTebow

Muscular Dystrophy @MDC_Alberta @MD_Canada @MDACharlotte
@MDACentralIN @MDA_NWOhio
@ncs_mda @MDA_NEO

Multiple Sclerosis @MS_getinformed @AnnDRomney @Montel_Williams

HIV/AIDS @gatesfoundation

Cancer @CancerDotNet @CancerSupportCm @SusanGKomen @PBCC @NFL

Spinal Cord @spinalinjuries @UnitedSpinal @SPINALpedia @SCSpinalCord

@realDonaldTrump @DonaldJTrumpJr @Hillary2016Pres @BernieSanders @BillGates @MarkZuckerbergF

Replies

FieldValue
Email:
Handle:
Title:
FieldValue
Email:
Your Email Address Will Not Show Up
Handle:
Alphanumeric only. No spaces.
Type:
State:
Title:
Share Link:http://www.disabilityreports.org/discussion/  .html