From The ALS Association Leadership

The Motor Neurone Disease (MND) Association has given The ALS Association the great honor of hosting the 21st International ALS/MND Symposium being held this month in Orlando, Florida. The symposium brings together the world’s greatest minds focusing on ALS and MND to share information and move research ever closer to discovering causes, new treatments and a cure for this disease. Among the important meetings will be the “Ask the Experts Forum” held on Dec. 9, which is organized especially for people with ALS, their families and caregivers. This forum is free to the public and requires no registration. The Allied Professionals Forum takes place on Dec. 10 and focuses on the experience of health professionals who care for people living with ALS/MND. The International Symposium for researchers, clinicians and allied professionals occurs Dec. 11-13. For additional information, visit http://www.mndassociation.org/research/for_researchers/international_symposium/.

The ALS Association participated in two wonderful ALS awareness events that both occurred in late September. In Dover, Delaware, NASCAR driver Willie Allen raced with the “big red” ALS Association logo displayed on the hood of his car in memory of his father, Al Allen, who passed away earlier this year.

Later that evening in Virginia Beach, Virginia, three-time Grammy Award winning recording artist Bruce Hornsby performed at his only 2010 concert to spread the word about the devastation of ALS and raise funds for care and research. Sadly, Bruce’s personal assistant of 12 years, Melissa Smith, succumbed to ALS on Sept. 14.

On display at the concert were 10 of the most beautiful quilts I’ve ever seen. Truly works of art, these quilts were part of The Association’s “Hopes & Dreams™ Quilt Challenge for ALS” initiated by Kathy Thompson, whose son, Josh, has ALS. For this project, 1400 quilts were hand crafted and donated to the project to raise awareness about ALS. All the quilts will be presented to people with ALS around the country, except for a few that will be auctioned to raise funds to support the fight against ALS.

The federal government has fully implemented the National ALS Registry, and now every person in the U.S. with ALS is able to self-enroll in the Registry and provide scientists and doctors with the information needed to more accurately answer questions, such as: How many American’s have ALS? What causes ALS? How can it be treated? These answers have eluded the medical community since ALS was discovered in 1869. The ALS Association played a pivotal roll in encouraging the passage of the Registry Act and securing funding to bring us to this important moment. This is an extremely exciting time in the fight against ALS.

Jeff Hallowell, who has lived with ALS since 2002, and his son, Ethan, designed the artwork for Toyota Racing’s NASCAR called “Lou Gehrig aka ALS,” which won the grand prize. Their entry was selected form more than 52,000 submissions. The car was featured in the parade lap before NASCAR’s Sprint Cup Series race at Phoenix International Raceway in mid November.

In the past few months, many of you have offered constructive criticism and made suggestions about the how to improve the operations of The ALS Association through social media. We appreciate your suggestions. If you have specific comments, you are always welcome to send them to me personally at janehgilbert@alsa-national.org.

At this time of year, many families and friends traditionally gather to share warm wishes and good cheer, as do the women and men of The ALS Association. We always remember to keep everyone touched by Lou Gehrig’s Disease foremost in our thoughts and prayers, but especially during the holidays. Please know that our purpose is clear, our will is strong and our dedication is everlasting. And, our quest to find answers that will lead to treatments and a cure for ALS goes on 24/7, 365 days a year.

As we continue this quest, we pause to acknowledge our friends and colleagues in the fight to bring an end to this disease, to renew our pledge to the people and families who live with ALS everyday, and to wish everyone a peaceful, happy and hopeful holiday season.

With warm wishes,
Jane H. Gilbert
December 3, 2010

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September, 2010 

An Amazing Facility

I recently attended the opening of the Steve Saling ALS Residence in Chelsea, Mass. This is the very first and only fully automated, skilled service ALS residence in the world. It is the result of hard work by the Chelsea Jewish Foundation and Steve Saling who is a talented landscape architect with ALS. He had a dream to build a home where people with ALS could live with a tremendous amount of independence. Steve and the other residents of the home can operate doors, window shades, the TV, elevator, even adjust the room temperature all by eye movement. It is indeed, a wonderful facility that will offer quality of life to those who live in the unit.

The day was not only the opening of the residence, but an opportunity for creating awareness for ALS. Massachusetts Governor Deval Patrick and his cabinet were on hand to participate in the ribbon-cutting ceremony. A round table luncheon and discussion included all of the ALS groups within the Commonwealth. And, in the afternoon the official opening included a short program, tours of the building and a reception for families and community leaders.

At the afternoon reception Steve Saling gave an inspiring speech, thanking everyone involved in making the ALS residence a reality.  Following Steve’s remarks I was proud to represent The ALS Association as the Residence was officially opened to the public. As part of my remarks I presented beautiful hand-made quilts to be used by each of the residents in the ALS wing. The quilts were a gift from the “Hopes and Dreams Quilt Challenge,” a project initiated by Kathy Thompson of Virginia Beach, VA, in conjunction with The Association’s DC/MD/VA Chapter. The quilt project is in honor of Kathy’s son, Josh, a 36-year-old father of two children, who lives with ALS. These quilts were the first of 1200 quilts made by volunteers that will be distributed to people with ALS and used to raise awareness about ALS and funds to fight the disease.

The ALS Association applauds the Foundation’s commitment to build such a remarkable facility where people with ALS can enjoy the independence and dignity they deserve. For more information about the residence, visit http://www.leonardflorencecenter.org/lfcl/index.html

Ongoing Research

In recent weeks, several articles have been published in the research journals that add to the body of knowledge about ALS. The new research provides clues into the causes of ALS and effective treatments for those battling this disease. This is of great interest to all of us.

Of course the elephant in the room is the nationally-published newspaper article that zeroed in on one aspect of a research study looking into head trauma as it relates to chronic trauma encephalopathy (CTE). The reporter made a huge leap from the reported research study and posed a question that the researchers did not investigate: “Could Lou Gehrig have had CTE rather than ALS?”

While there are many, many questions about ALS yet to be answered, we do know that ALS is a syndrome with variations in causes, potential triggers and progression rates, and neurologists with sufficient experience with ALS can recognize the symptoms and confidently diagnose the disease. We cannot perform an autopsy on Lou Gehrig, but doctors who are aware of Gehrig’s case history agree that he displayed the classic symptoms of muscle loss due to upper and lower neuron degeneration. In addition, Gehrig did not display the kind of cognitive loss and dementia associated with CTE.

As we posted on Facebook, it is very possible that, because Gehrig did sustain a certain amount of head trauma during his athletic career, he may have begun to show symptoms of CTE had he lived long enough. But there is no evidence in this study, or any other study published to date, that would lead to any other conclusion other than Gehrig’s death was caused by complications associated with ALS. This reporter’s question did, however, allow for sensationalized headlines that played well in the media. Regardless of anyone’s opinion about Gehrig’s diagnosis, we are certain that there is a debilitating, deadly disease known as ALS that is robbing families of their loved ones. And that’s the killer we fight everyday to eliminate.

Walk to Defeat ALS®

The end of summer is now in sight, and that means that The ALS Association Chapters around the country are gearing up for the fall Walk season. This is a wonderful opportunity to raise awareness about ALS, support the activities of your local chapter, and spend some time with people in your community who share your passion for putting an end to ALS. The national headquarters staff has formed a Walk team named the "A Team.” The online registration website made it very simple to set up our team.

Our Vision and Mission

In closing, I would like to draw your attention to our Vision, Mission and Values statement located on our website at http://www.alsa.org/alsa/mission.cfm. This updated document reflects hard work on the part of all of our chapters, key volunteers, people living with ALS and our Board of Trustees who gave their approval to the amended wording of the statement. It now reflects our laser focus on “creating a world without ALS,” and “leading the fight to treat and cure ALS through global research and nationwide advocacy while also empowering people with Lou Gehrig’s Disease and their families to live fuller lives by providing them with compassionate care and support.” Our commitment to this cause is steadfast, tenationous and urgent. We welcome any and everyone to join us in this quest.

Very best regards,
Jane Gilbert
ALS Association President and CEO
September 8, 2010

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August 2010

As suggested by many of our readers, we are initiating new, direct communication from The Association leadership. You have asked us to respond via social media, and so we have decided to include The ALS Association Facebook page as one means of communication along with The Association’s Website and other avenues of distribution. As is the nature of social media, readers will have the opportunity to comment on the subjects discussed, suggest new topics and comment on what others have to say.

A recent posting on our Facebook page from our Board of Trustees Chair, Honorable Jay Daugherty, stimulated an interesting discussion, and we appreciate each of you who took the time to make comments. Jay, whose father passed away from ALS, has seen the relentless progression of the disease and knows first hand the devastation ALS imposes on a family and entire communities.

Similarly, Stuart Obermann, our newly-elected Chair of the Board of Representatives and past chapter-elected member of our Board of Trustees, shared his touching story of caring for his son Eric, who was diagnosed with ALS in 2002 at the age of 21. Stuart and his family are almost single-handedly responsible for establishing The ALS Association Alabama Chapter.

In addition, National Trustee Elizabeth Rosenberg posted her story about her mother’s ALS diagnosis in 1989 and only then learned that her grandfather also died from ALS. Today, she understands the possibility that she and/or one or more of her children could one day be diagnosed.

Some of you might not be aware that I, too, have been directly affected by the disease. The husband of one of my dearest friends died of ALS just a little over two years ago. During his illness, I was privileged to be part of their circle of care, and I said at that time “if the job of CEO ever becomes available, it’s the job I want.” Little did I realize that shortly after his death, I would be afforded the opportunity to help shape the future of The ALS Association as the new President and CEO, and have a direct impact on fighting this disease.

I think it’s important that our readers know how committed the staff and our Board members are to the fight against ALS. Many of our current Board members have direct family connections to ALS, and one, Andrew Fleeson, has been living with ALS for more than 20 years. It is also important to note that some of the members of our Board of Trustees serve because, like me, they had friends who suffered from the disease, and then there are others who have simply been touched by the mission and have chosen us as their volunteer organization of choice.  We all work towards our common Vision of “creating a world without ALS.”

Many of the comments that have been made are directly related to the lack of ongoing communication. There have been many very good suggestions including that we need to update our website. We have already started that process, and I would ask your help. If you find pages that are outdated and aren’t relevant, please let us know so that we can pull them.  We are working on a complete revamp of our site so that it will be friendlier to the viewer, and as that work progresses, we will certainly share it with people who have offered to help us make it more user friendly. We are also in the process of putting together a comprehensive communications plan that includes social media. Trustee, Robin Ganzert is the Chair of our Development and Communications Committee, and she is also heading a task force called “Partnership for Growth.” That task force is reviewing our opportunities for funding and communication to all of our audiences.

You have also commented on the lack of public awareness and the need for a spokesperson. We welcome anyone who has a connection with people who might help promote our cause. Currently, we work with the support of stage and screen icon Angela Lansbury; daytime-drama star Kate Linder; sports figures Curt Schilling and his wife Shonda, Tommy John, Kent Hrbek and David Cone, all of whom have given countless hours of their time and talent to help us raise awareness as well as funds to fight the disease through media interviews and public service announcements. In addition, the multitalented musician Bruce Hornsby is dedicating his only 2010 concert to the benefit of The ALS Association’s DC/MD/VA chapter in Virginia Beach, VA in September.

For the past two years, The ALS Association has partnered with three other ALS organizations and Major League and Minor League Baseball in an event called “4-ALS” to raise awareness and funds during the commemoration of the anniversary of Lou Gehrig’s famous farewell speech given on July 4, 1939. The ALS Association is the premier charity of Minor League Baseball, and Major League baseball teams continue to play a role in many of our local chapter events. We are currently working on another public awareness opportunity with major radio stations that broadcast baseball games.

You have asked for additional information about our research projects—who we are working with and what we have invested.  While currently a list of all funded studies is online, we will post an update periodically via this site.  Trustee Ellyn Phillips, who lost her husband to ALS and has worked with our research department for many years, is the new Chair of the Research Committee.  She is committed to the funding of research world-wide and continues to raise dollars to help with this cause.  It is our goal to find a cure for this disease and enable important laboratory findings to advance to the clinic.

Thanks to the efforts of PALS and families across the county, our Advocacy program has realized significant victories.  However, much more must be done! We need your help and want your continued input.  Elizabeth Rosenberg is the new Chair of the Advocacy Committee, and she is committed to continuing to improve and enhance our efforts.  As part of that commitment, we want to hear from you with your suggestions and ideas.

As previously outlined in the messages from Jay and Stuart, we have a new ALS Association with an entirely new governance structure. We also have a new staffing structure designed to support the chapters, centers and clinics. These changes include a new Chief of Chapter Relations, a new Chief Financial Officer, and a new Chief Development Officer. We have moved our official headquarters to Washington, DC; have cut almost two million dollars out of our national operating budget; and have right-sized the national staff to better focus our efforts. All of this has been accomplished so that we can add additional money to our programs including Research, Advocacy and Patient Care. We are making changes, and we appreciate your input and your help.

This is the beginning of what I hope will be an ongoing dialogue. You will hear from members of our Board, from me and from other members of the national staff.  We will post quarterly updates on our activity via this site.  And, if you have specific questions, we will see that they are referred and answered in a timely manner. If you have constructive suggestions, we are happy to hear them. We agree that it’s time to stop operating in silos and work together to offer hope and progress to those of you who are living with ALS.  Like you, we want to put an end to this disease, and as one of the organizations on the front line, we will continue to fight with all of you to find the cause and the cure.

I look forward to hearing your thoughts and ideas about how we can reach our common goal and stop ALS once and for all.

Very best regards,
Jane Gilbert
ALS Association President and CEO
August 5, 2010