ALS Advocates Needed

The ALS Association’s 2009 National ALS Advocacy Day and Public Policy Conference is coming up soon. On May 10-12, PALS, family members, caregivers, and friends from across the country will gather in Washington, DC for this empowering three-day event to share their ALS stories with Members of Congress and advance our public policy priorities, which are providing the roadmap that will lead us to a treatment and cure.

We need your help in getting out our message. If you are interested in joining us in Washington, DC on May 10-12 for National ALS Advocacy Day and Public Policy Conference, contact Beth Mohsinger at (212) 720-3060 or mohsinger@als-ny.org.

We are especially looking for people who are constituents of these Congressional members:

Rep. Nita Lowey (Westchester and Rockland Counties)
Rep. Jose Serrano (Bronx)
Rep. Joseph Crowley (Bronx and Queens)
Rep. Steve Israel (Long Island)
Rep. Rodney Freilinghuysen (Essex, Morris, Passaic, and Somerset Counties, NJ)
Rep. Steven Rothman (Bergen County, NJ)

These members serve on key committees that are influential in advancing this year’s ALS priorities. You can check to see who your Representative is by clicking on the following link and entering your zip code: http://www.congress.org/congressorg/dbq/officials

To learn more, contact Beth Mohsinger at (212) 720-3060 or mohsinger@als-ny.org

For registration information and a schedule of events, please visit: www.alsa.org/policy/alsday.cfm

It is clear that our advocacy efforts have had an impact. In 2008 alone, our successes included:

· Enacting the ALS Registry Act, which may become the single largest ALS research program ever created;

· Continuing funding for the ALS Research Program at the Department of Defense as Congress provided an additional $5 million for the program; and

· Working with the VA to implement new regulations that make ALS a military service connected disease, providing full health and disability benefits to veterans with ALS and their survivors.

Social Security to Distribute Stimulus Payments in May

The Social Security Administration (SSA) announced that in May they will distribute a one time payment of $250 to Social Security and Supplemental Security Income (SSI) beneficiaries. The payment is the result of the economic stimulus package signed into law last month. A leaflet discussing the payment in greater detail is available as a PDF Download here, , and additional information is available on the SSA website here.

Watch a video about the one-time payment here.

Recipients of veterans benefits and Railroad Retirement benefits also are eligible for the payments in addition to those receiving Social Security. People eligible for the benefits do not have to take any action in order to receive the payments. They will be paid to you by the agency from which you currently receive benefits. Information for veterans will be available on the VA website and for recipients of Railroad Retirement benefits at www.rrb.gov.

Note: If you receive benefits from more than one agency (eg, SSA and VA), you will receive one $250 payment, not two payments.

Many people with ALS will qualify for these benefits based on regulations The ALS Association helped to establish which make it easier for PALS to qualify for both Social Security benefits and VA benefits.

We hope this information is helpful to you. If you have any questions or would like additional information, please contact The ALS Association at als@als-ny.org or toll-free at (800)-672-8857.

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Congress Funds ALS Registry, Respite Care

We have just secured two important victories in the fight against ALS as the United States Senate voted to provide an additional $5 million for the national ALS registry and $2.5 million in funding for respite care! The funding for both programs was included in the Fiscal Year 2009 Omnibus Appropriations bill, which is expected to be signed into law by President Obama in the coming days.

The ALS Association has advocated this funding for both programs since the FY 2009 appropriations process began in February 2008. With passage of the Omnibus bill, we now can declare victory in accomplishing each of our top public policy priorities from last year! Thanks to the efforts of advocates across the country who reached out to their Members of Congress to tell the ALS story, in the past year alone we have:

• • Enacted the ALS Registry Act and secured $5 million in continued funding;
• • Helped to establish new regulations at the VA to make ALS a service connected disease, providing military veterans and their survivors access to more than $500 million in health and disability benefits;
• • Continued funding for the ALS Research Program at the Department of Defense through a $5 million appropriation. A total of $10 million has now been provided to the ALSRP, which is specifically designed to identify new treatments for ALS; and
• • For the first time, secured appropriations to begin funding the Lifespan Respite Care Act, which we originally helped to pass in 2006 and will support state-based respite care programs.

Taken together, our advocacy efforts are advancing ALS research, improving patient care, and creating the roadmap that will lead us to a treatment and cure for this disease! Thank you to everyone in the ALS community whose persistence and year-round efforts made these victories possible!

Stay Involved!

Despite these victories, we face many challenges as we work to continue this success and accomplish our 2009 Public Policy Priorities. That's why it's absolutely critical that you stay involved in our efforts. As ALSA Advocates, you are making a difference, so please keep an eye out for our action alerts throughout the year and urge others to join our cause by becoming ALSA Advocates too! We must continue these and other vital programs in FY 2010!

National ALS Registry

The $5 million in additional funding for the registry is a more than $2 million increase over last year's funding level and brings total funding for the national ALS registry to $10 million! This funding has led the Centers for Disease Control and Prevention to begin to establish the building blocks for the registry and identify the most effective ways to identify ALS cases and share information.

The $5 million in funding we secured for FY 2009 will enable CDC to expand on the existing projects and begin to collect information on a broader scale. In order to keep up-to-date on the latest information about the registry, including how you or your family members may be able to participate, please make sure you are signed up to be an ALSA Advocate via our website. If you already are signed up, please update your profile and select ALS Registry as an issue of interest. In this way, we can provide you with the most recent information about this important research program.

What is the ALS Registry Act?

Read our original announcement about the ALS Registry Act for more information.

Respite Care

In 2006, The ALS Association helped lead the fight to enact the Lifespan Respite Care Act. The legislation, which was signed into law by President Bush, authorizes federal grants to the states and other entities to help families and organizations, like ALS Association Chapters, access quality and affordable respite care services. With the $2.5 million we secured for FY 2009, this important program can begin to be implemented and deliver vital respite services to people with ALS and their families. We will provide additional information to ALS Association Chapters and families in the coming weeks and months to let you know about opportunities made available by this funding.

National ALS Advocacy Day

Join us in Washington, DC May 10-12 for the 2009 National ALS Advocacy Day and Public Policy Conference. This empowering event has directly led to our successes, including the ALS registry and respite care. In addition to helping to secure funding and support for ALS research and patient services, attendees at this year's conference also will learn the latest updates on programs made possible through our advocacy, like the national ALS registry, DOD research and stem cell research.

Help us continue to make a difference in 2009! Information about this year's conference, including registration and hotel information, is available on our website at www.alsa.org/policy/alsday.cfm.

If you have any questions or would like more information about this update, please contact the Advocacy Department at als@als-ny.org or toll-free at (800)-672-8857.

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FDA, Insmed, Inc. Announce Special Program for IPLEX

The U.S. Food & Drug Administration granted approval for a limited number of people with ALS in the United States to receive IPLEX, a drug that combines insulin-like growth factor (IGF-1) and IGF binding protein 3. IPLEX, which has not been approved for use in ALS, is manufactured by Richmond, VA-based Insmed, Inc. The new program is the result of an agreement between the FDA and Insmed.

The ALS Association hopes that the FDA-approved program will develop informative data about IPLEX that can lead to a better understanding of its efficacy and safety and enable both patients and clinicians to make more informed decisions about the use of IPLEX and its potential as a therapy for ALS. To this end, The Association encourages the FDA and Insmed to establish partnerships with the ALS community to ensure that the program yields meaningful results that will guide the next steps in determining whether IPLEX is effective and safe for ALS.

IPLEX originally was approved in the United States as a treatment for children with growth failure, but it is now discontinued and no longer available for this population. The drug is being tested in a now-closed study involving myotonic muscular dystrophy (MMD). Insmed is supplying IPLEX to the Italian government under an "expanded access program," but it continues to be an untested and unproven treatment for ALS in the United States.

Based on existing clinical and scientific evidence, The ALS Association cannot encourage or recommend the off-label use of this medication without substantive evidence of its efficacy through a rigorous clinical trial. The ALS Association is continuing to monitor and assess information about IPLEX as it becomes available to provide the public with the most up-to-date reports about its potential for ALS.

Additional information on the announcement is available here: http://www.fda.gov/cder/drug/infopage/mecasermin_rinfabate/default.htm.

For additional information from The ALS Association, please contact our Patient Services Department at patient_services@als-ny.org or toll-free at (800) 672-8857.

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President Lifts Restrictions on Stem Cell Research

President Obama signed an Executive Order which lifted restrictions that limited federal funding for embryonic stem cell research. Under the previous policy, implemented by President Bush, federal funds could not be used to support embryonic stem cell research involving stem cell lines derived after August 9, 2001.

The ALS Association released the attached statement (click here) today applauding the President's action. With this Executive Order, the research community may now pursue new opportunities to advance our understanding of ALS as well as identify biomarkers and new treatments for the disease.

We would like to thank advocates across the country who have contacted the President in recent weeks urging him to make this policy change. Your efforts have paid off! Please take a minute to send a thank you letter to the President via the Advocacy Action Center of our website here: http://capwiz.com/alsa/home/.

Next Steps

In the coming weeks and months, the National Institutes of Health (NIH) will develop guidelines to implement this new policy. During this time, The ALS Association, along with the Coalition for the Advancement of Medical Research, of which The ALS Association is an active member, will work with the NIH and Congress to ensure that appropriate ethical and scientific policies are in place to guide the advancement of stem cell research. This is especially critical to allow NIH to take advantage of $10 billion in additional funding that was included for NIH in the recently enacted economic stimulus package.

Stem Cell Research Featured at 2009 ALS Advocacy Conference

This year's Advocacy Conference, which takes place in Washington DC May 10-12, also will feature a breakout session devoted exclusively to ALS stem cell research. Among the confirmed speakers is Dr. Story Landis, Director of the National Institutes of Neurological Disorders and Stroke, and head of the NIH Stem Cell Task Force. Dr. Landis and other panelists will provide the latest updates on stem cell research including how the NIH plans to implement the new policy. Additional details about the session and the conference agenda are available in the Advocacy Day Registration brochure, which can be found on our website, www.alsa.org/policy/alsday.cfm.

ALS Association Stem Cell Research Information

The ALS Association directs and funds a range of stem cell research projects in the search for new discoveries and potential therapies. For more information from The ALS Association about stem cell research, click on http://www.alsa.org/research/stem_cells.cfm.

If you have any questions about this update or about the 2009 National ALS Advocacy Day and Public Policy Conference, please contact us at als@als-ny.org or toll-free at (800)-672-8857.

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“Netbooks” As Communcation Devices.

For those PALS who have good hand function, but just have trouble speaking, a Netbook may be the solution for you.

There is a new category of small computers called “Netbooks” that have been developed to be light and portable, suited for mainly surfing the net. For PALS who are Bulbar, meaning that only their speech and swallowing has been affected, a netbook can be used as an inexpensive communication device with LOTS of other benefits.

If a PALS wanted a commercially available communication device that had this capability, it can cost over $5000.

The Netbooks and recommended accessories cost approximately $400. With the addition of free software the Netbook turns into a communication device.

If you want to purchase one of these, these are the features to look for:

- Windows XP – the free software that allows the device to speak for you will not run on other operating systems.

• Webcam for video calls.
• 6 cell battery – this will give you a longer battery life.

Additional Accessories to consider:

• USB speakers – these will allow you to be heard more clearly when using the device for communication.
• Carrying case.

Free software that is recommended:

• E-triloquist – www.etriloquist.com – speaks what you type and has preprogrammed phrases.
• Click-N-Type - www.lakefolks.org/cnt - free onscreen keyboard if typing is difficult.
• Skype – www.skype.com – use your computer as a telephone and make video calls with a webcam. You can also use this program to type your responses while the other person speaks to you.
• Mozilla Firefox – www.mozilla.com – free web browser.
• Free virus software, such as AVG – www.free.avg.com

If you have question or need help choosing what to purchase, please call our Assistive Technology Specialist at 212-720-3054 or email at verdone at als-ny dot org.

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Long Island Painter Succumbs to ALS

After fighting ALS, Huntington Bay, Long Island, painter Mark Kuhn died at the age of 57 on Wednesday, March 4, 2009. He was racing to finish a last series of paintings he called, “The Lifeline Series.”

In a Newsday story that ran on Friday, March 06, 2009, his wife Donna Simonetti said that he had produced enough paintings for a full show. "He left one unfinished painting and one blank canvas," she mentioned. A show featuring “The Lifeline Series” of paintings is scheduled to be exhibited at the Art League of Long Island this July, 2009. The Art League has said that the show will go on.

Kuhn’s plight was documented in a Newsday article that ran the Sunday right before died. The story, titled, “Huntington Bay artist painting against the clock” highlighted Kuhn’s struggle to continue producing his art despite the debilitating illness.

"It's got to be very uncomfortable and very hard, so there's a lot of will there to do it,” Lon S. Cohen, Director of Communications for The ALS Association Greater New York Chapter was quoted as saying in the article about Kuhn’s desire to continue to work.

Last year, during the The ALS Association Greater New York Chapter’s Long Island Walk to Defeat ALS, Mark Kuhn’s T-shirt design for his family’s Walk Team, called team “Making Our Mark” won the first place prize for best T-shirt design on the day of the event.

The Newsday article says that “in addition to his wife, Kuhn is survived by a daughter, Paige, and a son, Bennett, both of Huntington Bay; his mother, Kathryn Kuhn of Minneapolis; a brother, Matthew Kuhn of Corcoran, Minn.; and two sisters - Gabriel Ross of St. Paul, Minn., and Georgia Kuhn of Coon Rapids, Minn.”

The Kuhns request donations to the ALS Association in lieu of flowers. Information can be found at web.alsa.org/goto/markkuhn.