The Road To The Final Four

From the ALS Association Florida Chapter:

The ALS Association Florida Chapter
Media Alert
888-257-1717
813-637-9010 (fax)


FOR IMMEDIATE RELEASE
March 31, 2010

ALS Patient to Deliver Pre-Game
Speech to Butler University Basketball Team before NCAA Final 4
Game

WHO/WHAT:
Matt White, 43, a Florida man living with the terminal illness ALS, also known
as Lou Gehrig’s Disease, is gearing up to deliver a pre-game speech to the
Butler basketball team for the NCAA Final 4 game in Indianapolis on Saturday.
Matt White is a Butler alumnus who now lives in Cape Haze, Florida. ALS has
paralyzed White, robbing him of his ability to walk, speak, and breathe well.
However, he hasn’t let the disease steal his passion for life. White plans to
deliver his pre-game speech through his wife who will speak for him.

The inspiring speech comes in anticipation of The ALS Association’s ALS
Awareness Month which will occur in May. During the month, The ALS Association will join with patients like Matt White who are living life to the fullest in spite of ALS and attempt to raise awareness of the deadly illness which is
currently impacting more than 30,000 Americans. The speech also comes in
anticipation of National ALS Advocacy Days, May 9-11, when hundreds of patients will join in Washington, D.C. to advocate with lawmakers to enact laws that will
help people living with ALS.

Amyotrophic Lateral Sclerosis (ALS), or Lou Gehrig’s Disease, is a progressive neurodegenerative disease that causes its victims to become completely paralyzed, gradually stealing their ability to move any of their limbs. The disease affects motor neurons in the brain and spinal cord. When the motor neurons die, a patient’s muscles waste away. The patient is robbed of the ability to walk, speak, eat, and eventually breathe. Upon diagnosis, patients are given only two to five years to live. There is no cure for ALS.

Visit www.alsa.org
for more information about ALS.

WHEN/WHERE:
Tomorrow, April 1st at 1pm
Matt White departs from Venice Municipal Airport for Indianapolis,
Indiana

Venice Municipal Airport
150 Airport Avenue East
Venice, FL
34285-3937



MEDIA CONTACT: Kamden Kuhn, The ALS Association Florida
Chapter
(813) 335-9704
(cell)
kkuhn@alsafl.org

Interviews with Matt White and his wife, available upon request

Win A Championship This Week, Then Win A Championship For Life

Dear Butler Hoops Team,

We heard on WIBC radio yesterday that Matt White, a Butler alumnus with Lou Gehrig's Disease, is going to address you before the game on Saturday (as he has done before ).

He can teach you about focus and courage and motivation and defeating adversity and how important the spirit within is to your true success in life. He knows. He must be courageous and strong every day just to do the things that the rest of us take for granted. His brain is as sharp as ever. Pay attention to that part. He's a perfectly capable human being who has much to teach us all, but we have to listen to him in special ways.

So please listen to Matt White, then go out and stick to your knitting and win your next game, then finish your educations, and perhaps take on some even bigger challenges. There are other big games on other big stages and people's lives are at stake.

Here's a great movie plot for you... Butler wins the NCAA championship then a Butler hoops star goes on to win the Nobel Prize in Medicine for curing ALS.

Act I: Practice, Go to Class, Beat Michigan State

Terri Gross with Tony Judt on NPR - Fresh Air

"A Historian's Long View On Living With ALS"

http://www.npr.org/templates/story/story.php?storyId=125231223

Definitely worth a read or listen!

Another Piece on Piece by Piece

Tampa Tribune
March, 27, 2010

Piece by Piece Raises Awareness Person by Person

Trapped Unleashed

http://www.prweb.com/releases/2010/03/prweb3773654.htm

Steve "Ballpark" Franks Understands ALS Advocacy

...and he'll soon be driving the display to our nation's capital!

http://webfl.alsa.org/site/PageServer?pagename=FL_PiecebyPiecetoDc

There Is One Thing We Can Probably Agree Upon

Amidst the rancorous arguments over the healthcare reform package that was passed yesterday, we seem to have lost a rather significant item for those suffering from a disease whose therapies are still in labs somewhere.

The legislation included 12-year patent protection for new biotech drugs. This seems like excellent news for those with ALS -- a disease with no existing effective treatment. The added protection should encourage more investment in biotechs, and we urgently need more investment so that promising science can be developed into effective treatments.

Red Wristband For The Guest Of Honor, Please!

Anybody going?

Click for event info.

Here Is Another Way To Advocate For Those With ALS

For your consideration...

www.wehaveaprayer.org

For Your May Travel Planning...

Following is from an email communication received from the ALS Association last week:

Have you registered to attend the 2010 National ALS Advocacy Day and Public Policy Conference May 9-11 in Washington, DC? If you plan to join us in the nation's capital, please register and reserve your hotel room TODAY! The deadline to receive reduced registration and hotel rates is Friday, April 9, just a few weeks away.

Your participation in the Advocacy Conference is needed to help make a difference in the fight against ALS. Successes like establishing an ALS registry, securing more than $400 million in funding for ALS research, and eliminating the 24-month Medicare waiting period could not have been accomplished without the efforts of individuals who have participated in Advocacy Day. However, the ALS community needs your help today more than ever. So please plan to join us in Washington this May!
Early Bird Registration Deadline: Friday, April 9
You must register by FRIDAY, APRIL 9 in order to receive the reduced conference registration rate of $175 ($350 for non-affiliates) and $25 for children age 3-16. Fees for registrations submitted after April 9 are $350 for attendees affiliated with The ALS Association, an ALS Association Chapter or other affiliated organization, $700 for non-affiliates, and $50 for children.
Conference registration fees are waived for all people with ALS and for a caregiver traveling with them to the conference.
Click here to register: 2010 National ALS Advocacy Day and Public Policy Conference.
Hotel Reservation Deadline: Friday, April 9
April 9 is the deadline to reserve a hotel room at the reduced conference rate of $219 + tax/night. After the deadline, this special rate no longer will be available to attendees. Moreover, the hotel no longer will hold rooms specifically for conference attendees and it is possible that, after the deadline, the hotel will not have rooms available during the conference dates or they may be available at much higher rates.
To reserve a hotel room, please contact the hotel directly:
JW Marriott Hotel
1331 Pennsylvania Ave, NW
Washington, DC 20004
Phone: (202)-393-2000

ADA Rooms
The ALS Association has reserved ADA rooms at several different hotels in Washington, DC to help ensure that all PALS who want to attend the conference have access to ADA accessible accommodations. If you or your Chapter wish to request an ADA hotel room, you must contact Mary Wisniewski, event planner for The ALS Association's 2010 National ALS Advocacy Day and Public Policy Conference. She can be reached at marywisniewski@comcast.net or by phone, (202) 746-0043. Please do not contact the hotel to request an ADA room as the hotel will not be able to guarantee your request.

Click here, http://www.alsa.org/files/pdf/advocacy/2010_ADV_Brochure.pdf, to see the agenda for this year's conference and plan to join us as we continue to create the roadmap that will lead us to a treatment and cure for ALS.

The Catch-22 of Forecasting Markets

Here is an abstract for a new analysis of the pharmaceutical market for ALS:
http://www.prlog.org/10573554-bharatbook-amyotrophic-lateral-sclerosis-lou-gehrigs-drug-pipeline-analysis-and-market-forecasts.html
The market analysis certainly wouldn't give deep-pocketed capitalists a lot of reasons to invest in this market-- "It has analyzed the current market landscape and found it to be weak."
Perhaps the current market is weak because the one drug approved for that market is weak and isn't compelling enough for many patients to use. Perhaps the current market is weak because the patients die so quickly. Perhaps the current market is weak because we really don't have a good idea of how many patients there are.
Perhaps all of the reasons why the market is perceived to be weak would be proven wrong if only there were an effective therapy for ALS.
These reports can be a kind of racing sheet for those making decisions on where to place their sizable bets on where to invest in the uncertain race of drug development.
Those who pay attention to ALS know that it is more pervasive than medical science perceives and that this report implies.
Without good therapies, the market looks weak. A market perceived as weak doesn't elicit investment so that we'll get good therapies. How do we break this cycle of stagnation?

This Letter Definitely Deserves A Wider Audience

http://www.lettersofnote.com/2010/03/lou-gehrigs-disease.html

Some thoughts came to my mind after I read the letter Lou Gehrig wrote --

• Incidence of MS and ALS are very similar, however, there are many more MS patients in our midst at any moment in time. Medical science has simply made discoveries that permit people with MS to live a fuller (albeit difficult) lifespan. Back in 1939 that was not the case. Both diseases were mysterious and pretty quick death sentences. Today ALS is the disease that has retained that terrible distinction.
• What world-class athletes today could and would personally write such a spontaneous and kind letter?

In The Shadow Of The United States Capitol Building...

... the Piece by Piece display will be presented to the world on Tuesday, May 11, 2010 -- ALS Advocacy Day when hundreds of advocates will be swarming on Capitol Hill to talk to legislators about ALS.

This is an incredible opportunity, and we are extremely grateful for those who made this happen.

The display will be at the plaza arount the U.S. Capitol reflecting pool outside the west front of the Capitol building. It is a wonderful spot for visibility and will be easy for people working on Capitol Hill to access.

Stay tuned for more information, or keep an eye on www.alsafl.org for more details.

All day Sunday, the display will be at the Navy Memorial on Pennsylvania Avenue. All day on Tuesday, it will bring its message to the United States Capitol. This is huge for ALS awareness.

Send your friends. Send your legislators. Send their staffs.

ALSA Call To Action - ALS Registry Funding

If you have not yet viewed the Engel / Sebelius dialogue in the prior post, I encourage you to do so to add some context to this.

Following link was just tweeted by ALSAssociation:

http://www.alsa.org/policy/article.cfm?id=1595

March 09, 2010
Help Increase Funding for the National ALS Registry

We need your help TODAY to increase funding for the National ALS Registry. U.S. Representatives Eliot Engel (D-NY) and Lee Terry (R-NE) are circulating a letter requesting the House Appropriations Committee provide $10 million in funding for the Registry next year. We urge you to contact your Representatives today to request that they sign onto this critical letter and support their constituents in the fight for a treatment and cure for Lou Gehrig's Disease. The text of the Engel-Terry "Dear Colleague" letter is available by clicking here.

Representatives Engel and Terry have set a deadline of March 18, 2010 for signing onto the letter. So please contact your Representative TODAY! A sample letter you can email to your Representative is available in the Advocacy Action Center of our website here: http://capwiz.com/alsa/home/.

While Congress has supported the Registry in the past, we cannot assume the funding will continue. That's because there are many other programs competing for scarce dollars and the current economic and partisan climate present additional challenges to securing continued funding for the Registry. Therefore, it is vital that you contact Congress TODAY. And tell your family, friends, and colleagues to do the same. Your outreach can help ensure that we can realize the goals of the ALS Registry - to help identify what causes ALS, how it can be treated or even prevented from occurring in the first place.

Click here to read the latest news on the implementation of the National ALS Registry.

If you have any questions or would like assistance reaching out to your Representative, please contact us at advocacy@alsa-national.org or toll-free at 1-877-444-ALSA.

It's A Month Old But News To Us - ALS Registry Act -

This interchange was pointed out on twitter by ALSofGNY...
I'm sorry that we had not seen or heard if it sooner!
It contains some concrete news regarding funding and it's good to know that a hearing heard the letters A L S.

DOD Funds In Search Of ALS Researchers

Following is information from ALSA:

http://www.facebook.com/notes/the-als-association/dod-to-request-als-research-proposals-in-march-75-million-available/351480154480

In March, the Department of Defense is expected to announce that it will be accepting applications for research proposals to be funded through the DOD's ALS research Program (ALSRP). A total of $7.5 million is available this year, a 50% increase over 2009. This funding is the direct result of the efforts of The Association and advocates across the country who last year successfully urged Congress to increase funding for the ALSRP.

The 2010 funding will be available for translational research projects that are specifically focused on developing new treatments for ALS. However, the program also will be accepting applications for certain basic research projects that demonstrate significant promise for developing a treatment for ALS. Additional details, including guidance for investigators interested in submitting applications, are available on the DOD's website.

We encourage you to share this information with researchers in your community so that they can take advantage of this important funding opportunity.

More Must be Done!
Please keep an eye out for additional Advocacy Alerts in the coming weeks to learn how you can help increase funding for the ALSRP. The ALS Association currently is working with Congress to double funding for the ALSRP to $15 million in 2011. As Congress begins the annual appropriations process, we will let you know when your outreach can make the most difference in the fight against ALS.

News Is Published Regarding The National ALS Registry

Unfortunately ALS marches to a much faster drummer than the registry development, but news was posted last week to give us an idea of the remaining project timeline.

http://wwwn.cdc.gov/ALS/ALSTimelines.aspx

The FAQs on that site are also helpful.

Engage Tomorrow's Scientists, Doctors, Senators, Physicians, Movers, Shakers

Please check out the Doodle 4 Google program here!

Can you imagine what a young person might wish to do? Cure ALS, play like Lou, make a parent well, invent a neuron transplant, produce a movie about people with ALS, raise $1 million for ALS, figure out what in the world causes ALS, save our military from ALS, design a better wheelchair, meet all of the NFL alumni with ALS, go to Washington for ALS Advocacy Day, keep 4 ALS alive on July 4,...

Can you imagine the awareness that an ALS-themed Doodle 4 Google winning entry would generate?

Please spread this information to young people and parents and schools. This is an opportunity to make a big difference.

Think Hard...

Do you know of someone who died from ALS many years ago? A neighbor, a coworker, a teacher, a grocer, a plumber?

If that person had served in the U.S. military (anytime, anyplace), his or her widow or widower is likely to qualify for VA Dependent and Indemnity Compensation (DIC).

It's quite possible that an elderly widow or widower struggling to get by is eligible for a monthly benefit and has no idea.

Military service plus a later (even much later) death due to ALS means that a surviving spouse qualifies for DIC.

It doesn't matter where or when the veteran served: it doesn't matter when the veteran died.

The VA can be reached at 1-800-827-1000. The Paralyzed Veterans of America can also be a big help in cutting through the red tape http://www.pva.org/ .

Please think hard and ask those widows or widowers if their spouses ever served in the military.

The opportunity to collect retroactive benefits has passed, but the continuing benefit is still available. http://als-advocacy.blogspot.com/2009/07/dear-abby-readers-learned-about-als-in.html

We Can All Be A Part Of Something Special For ALS In Washington

The ALS Association Florida Chapter's Piece-By-Piece display will be in Washington during the ALS advocacy days in May.

On Mothers' Day, Sunday, May 9, the display will be at the Navy Memorial. I understand that the Navy Memorial is on Pennsylvania Avenue, halfway between the White House and the U.S. Capitol. It is very visible and is directly across Pennsylvania Avenue from the National Archives.

Here is some background on the exhibit --

http://webfl.alsa.org/site/PageServer?pagename=SP_2009tour

http://webfl.alsa.org/site/PageServer?pagename=FL_PiecebyPiecetoDc

I had some quesions about the display and thought it would be good to share the answers I received from the ALSA Florida Chapter's folks here.

• They are working hard trying to secure another public spot in Washington for the exhibit for Monday or Tuesday of that week. News will be posted on their website when available.


• They can transport more mannequins, so if anyone would like to sponsor a mannequin honoring a loved one and expand the display in Washington, that is possible! http://tinyurl.com/yal533u


• Their e-store has an inventory of t-shirts for any of you going to Washington who would like to help build awareness on the streets of DC with your wardrobe. http://tinyurl.com/az2gwk Price is $15 each plus a modest shipping charge (so order a bunch).

Thanks to all who are making it possible for this edgy, professional, educational display to draw attention to ALS in in our nation's capital. We'll post more here as we learn more.

ALSA Advocacy Day information is available at
https://ssl.capwiz.com/alsa/attachments/2010_Advocacy_Conference__web_version_.pdf

Be there or be square.

Dear Dwight Freeney,

Please, please, please give this concept some thought as the cameras of the world are on the Colts and your ankle this Superbowl Sunday.

Thank you.

The Ultimate ALS Awareness Display Is Going To Washington!

http://webfl.alsa.org/site/PageServer?pagename=FL_PiecebyPiecetoDc

Following is Verbatim From The January 28, 2010, Federal Register

[Federal Register: January 28, 2010 (Volume 75, Number 18)]
[Notices]              
[Page 4568-4569]
From the Federal Register Online via GPO Access [wais.access.gpo.gov]
[DOCID:fr28ja10-66]                        

-----------------------------------------------------------------------

DEPARTMENT OF HEALTH AND HUMAN SERVICES

Centers for Disease Control and Prevention

[30Day-10-09BR]


Agency Forms Undergoing Paperwork Reduction Act Review

   The Centers for Disease Control and Prevention (CDC), Agency for
Toxic Substances and Disease Registry (ATSDR) publishes a list of
information collection requests under review by the Office of
Management and Budget (OMB) in compliance with the Paperwork Reduction
Act (44 U.S.C. Chapter 35). To request a copy of these requests, call
the CDC Reports Clearance Officer at (404) 639-5960 or send an e-mail
to omb@cdc.gov. Send written comments to ATSDR Desk Officer, Office of
Management and Budget, Washington, DC 20503 or by fax to (202) 395-
5806. Written comments should be received within 30 days of this
notice.

Proposed Project

   Registration of Individuals with Amyotrophic Lateral Sclerosis
(ALS) in the National ALS Registry--New--Agency for Toxic Substances
and Disease Registry (ATSDR).

Background and Brief Description

   On October 10, 2008, President Bush signed S. 1382: ALS Registry
Act which amended the Public Health Service Act to provide for the
establishment of an Amyotrophic Lateral Sclerosis (ALS) Registry. The
activities described are part of the effort to create the National ALS
Registry. The purpose of the registry is to: (1) Better describe the
incidence and prevalence of ALS in the United States; (2) examine
appropriate factors, such as environmental and occupational, that might
be associated with the disease; (3) better outline key demographic
factors (such as age, race or ethnicity, gender, and family history of
individuals who are diagnosed with the disease) associated with the
disease; and (4) better examine the connection between ALS and other
motor neuron disorders that can be confused with ALS, misdiagnosed as
ALS, and in some cases progress to ALS. The registry will collect
personal health information that may provide a basis for further
scientific studies of potential risks for developing ALS.
   During a workshop held by The Agency for Toxic Substances and
Disease Registry (ATSDR) in March 2006 to discuss surveillance of
selected autoimmune and neurological diseases, it was decided to
develop a proposal to build on work that had already been done and
coordinate existing datasets to create a larger database, rather than
to start from scratch with medical records review and physician
reporting. Four pilot projects were funded to evaluate the accuracy and
reliability of existing data from the Center for Medicare and Medicaid
Services (CMS) and various datasets from the Veterans Administration.
Preliminary results indicate that additional ways to identify cases of
ALS will be necessary to increase completeness of the registry.
Therefore, ATSDR developed a Web site where individuals will also have
the opportunity to provide additional information on such things as
occupation, military service, and family history of ALS, which is not
available in existing records.
   The registration portion of the data collection will be limited to
information that can be used to identify an individual to assure that
there are not duplicate records for an individual. Avoiding duplication
of registrants due to obtaining records from multiple sources is
imperative to get accurate estimates of incidence and prevalence, as
well as accurate information on demographic characteristics of the
cases of ALS.

[[Page 4569]]

   In addition to questions required for registration, there will be a
series of short surveys to collect information on such things as
military history, occupations, and family history that would not likely
be available from other sources.
   This project proposes to collect information on individuals with
ALS which can be combined with information obtained from existing
sources of information. This combined data will become the National ALS
Registry and will be used to provide more accurate estimates of the
incidence and prevalence of disease as well as the demographic
characteristics of the cases. Information obtained from the surveys
will be used to better characterize potential risk factors for ALS
which will lead to further in-depth studies.
   The existence of the Web site will be advertised by ATSDR and
advocacy groups such as the Amyotrophic Lateral Sclerosis Association
(ALSA) and the Muscular Dystrophy Association (MDA). There are no costs
to the respondents other than their time. The estimated annualized
burden hours are 2300.

                                       Estimated Annualized Burden Hours
----------------------------------------------------------------------------------------------------------------
                                                                                 Number of      Average burden
               Forms for ALS  respondents                      Number of       responses per     per response
                                                              respondents       respondent        (in hours)
----------------------------------------------------------------------------------------------------------------
Validation questions......................................             6,000                 1              2/60
Registration of ALS cases.................................             4,667                 1              7/60
Cases of ALS completing 1-time surveys....................             2,334                 6              5/60
Cases of ALS completing twice yearly surveys..............             2,334                 2              5/60
----------------------------------------------------------------------------------------------------------------


   Dated: January 22, 2010.
Maryam I. Daneshvar,
Acting Reports Clearance Officer, Centers for Disease Control and
Prevention, Agency for Toxic Substances and Disease Registry.
[FR Doc. 2010-1718 Filed 1-27-10; 8:45 am]
BILLING CODE 4163-18-P

Orlando Thomas - Much Younger Than A Vikings Quarterback Yet Benched By ALS

Here is some good reading for an NFL playoff weekend --

http://www.theadvertiser.com/article/20100123/NEWS01/1230317/Orlando-Thomas-Spirit-burning-bright

This would be an excellent couple of weeks for us to tell others about all of the NFL athletes who have been stricken with ALS. Is it an occupational hazard? Unfortunately we've not retained the data and the clues to figure it out. In any case, when an athlete gets Lou Gehrig's Disease, it gives us a tragic reminder about the rapid and difficult damage that the disease delivers every day.

Ravens and Vikings in the Superbowl would have been a great opportunity for ALS awareness since each team has a young alumnus dealing with the disease today.

Let's hope that the Vikings help the Orlando Thomas story continue in the press through Superbowl Sunday and beyond.

Here's my NFL ALS list. I'm all ears if anyone knows of others...

Eric Scroggins
O.J. Brigance
Glenn Montgomery
Pete Duranko
Peter Demmerle
Steve Smith
Tony Proudfoot (CFL)
Bob Waters
Matt Hazeltine
Gary Lewis
Orlando Thomas
Wally Hilgenberg