CELEBRATING P R O G R E S S The Les Turner ALS Foundation Annual Report 2011 ® Advancing scientific research ▪ Providing care and support ▪ Increasing awareness A BRIEF HISTORY Amyotrophic Lateral Sclerosis Les Turner ALS Foundation (ALS), more commonly known as Les Turner, after being diagnosed with ALS in Lou Gehrig’s disease for the New 1976, was frustrated by the lack of information and research on ALS. Shortly before his death York Yankees icon, is a progressive, in 1978, Les along with his family and friends, degenerative disease affecting established the Les Turner ALS Foundation so motor neurons. Motor neurons that ALS patients and their families could have carrying impulses from the brain the resources, support and hope for a cure that to the muscles cease function and Les did not have. eventually die, causing muscle For more than three decades, the Foundation has been the only independent, weakness, difficulty speaking and publicly-supported non-profit organization in Chicagoland dedicated solely swallowing, and ultimately total to the treatment and elimination of ALS. The Foundation is a nationally recognized leader in patient services, research and education for ALS and paralysis and death. The disease other motor neuron diseases. is not bound by race, culture or socioeconomic status and, at any The Foundation partnered with Northwestern University Feinberg School of Medicine in 1979 where it supports a large multi-disciplinary clinical program given time, approximately 35,000 and two cutting-edge scientific research laboratories. Our full spectrum of patient people in the U.S. are living with services includes professional in-home consultation services, support groups, ALS. Onset of symptoms typically medical equipment loan programs, respite grants and educational programs. occurs between the ages of 35 and The mission of the Les Turner ALS Foundation is to raise funds to: 65, but ALS can strike at any age. ▪ Advance scientific research into the causes, treatments and prevention of ALS While treatments and interventions ▪ Provide people living with ALS, their families and caregivers exceptional clinical can help alleviate some symptoms, care and support services enhance quality of life and prolong ▪ Increase awareness and education of ALS survival – there is no cure. A M E S S A G E FROM THE PRESIDENT AND THE EXECUTIVE DIRECTOR Dear Friends, Most notably, we celebrated one of the most significant research discoveries in decades. Dr. Teepu Siddique and “Hope is an incredibly powerful tool that his colleagues at the Les Turner ALS Research Laboratory we use to keep us going every day…Today for the first time have identified a faulty protein pathway that hope has form. Today that hope has a as a common cause of all forms of ALS. This amazing finish line.” breakthrough brings us closer to a possible treatment and - Steve, ALS patient hopefully the cure that we have been searching for. Now Harvey Gaffen that would be something to celebrate! The past year gave us many President reasons to celebrate! The year 2011 was truly a cause for celebration and would not have been possible without your generous More than 6,000 supporters joined and continuous support! together to celebrate the 10th annual ALS Walk4Life on a sunny But there still is much work to do. As treatment protocols September day along Montrose for our patients improve, the need for our patient and Harbor. The sea of ALS patients, family services grows. And government funding for their loved ones and friends of the Wendy Abrams research continues its steady decline. So it is only with Executive Director Foundation walking in support and your support that we can cross that finish line and truly celebration was a sight to behold! celebrate – with ALS survivors. Swimming in memory of his father who died of ALS, We hope you will continue this journey with us. Doug McConnell became the 48th person over the age We are so grateful for your support and would not be of 50 to successfully swim across the English Channel where we are today without you. Thank you for giving when he reached a finish line on a French beach after our patients and those who care for them a cause for swimming nearly 30 miles in 14 hours and 18 minutes. celebration…and HOPE. In addition, Doug raised more than $160,000 in support of the Foundation’s Research Initiative. Both amazing reasons to celebrate! 3 CELEBRATE DISCOVERIES In 2011, scientists in the Les In 1979, the first Les Turner ALS Turner ALS Research Labs Research Laboratory was established identified a second faulty protein, with a staff of four dedicated to finding a cure for ALS. In 2011, we came one sequestosome1, in the same step closer with the discovery of an recycling pathway as ubiquilin2. underlying disease process. This strengthens the belief that this broken system is at the heart of Les Turner ALS Research ALS. Because these two genes are Initiative mutated and not recycling damaged Led by Teepu Siddique, MD, since 1991, the Foundation’s first research lab focuses proteins, those proteins accumulate on the genetic origin, development and treatment of ALS. Dr. Siddique and his abnormally in the motor neurons team maintain an extensive blood, cerebrospinal fluid, and brain and spinal cord in the spinal cord and cortical tissue bank collected from people both with and without ALS for their studies. and hippocampal neurons in the Major achievements include: brain. The protein accumulations ▪ Discovered the underlying disease process for all forms of ALS. The basis resemble twisted skeins of yarn, of the disorder is a broken down protein recycling system (ubiquilin2) in the characteristic of ALS, and cause the motor neurons of the spinal cord and the brain, causing the degeneration of the degeneration of the neurons. neurons. This discovery represents a major breakthrough in ALS research and opens up a new field for finding an effective treatment. The discovery of the underlying ▪ This research discovery was published in Nature, the world’s most cited disease process for all forms of interdisciplinary scientific journal, and theArchives of Neurology. ALS, not only provides an opening Led by P. Hande Ozdinler, PhD, the Foundation’s second lab focuses on to finding treatments for ALS, corticospinal motor neurons (CSMN) – tiny neurons that live in the cortex of but could also pay dividends by the brain and send out messages to the spinal cord. ALS attacks these neurons, showing the way to treatments along with the neurons that live in the spinal cord itself. In 2011, the Ozdinler lab achieved the following major accomplishments: for other, more common neurodegenerative diseases such ▪ Generated the lab’s first transgenic mouse, the UCHL1-GFP mouse. Multiple as Alzheimer’s, dementia and lines were created and, for the first time, motor neurons have been fluorescently Parkinson’s. tagged in a disease model and neuron-specific genetic labeling has been made possible. ▪ Organized the inaugural Les Turner Symposium on ALS, where scientists from inherently different fields come together to present on similar issues, thus contributing to the field of neurodegeneration at large. 4 CELEBRATE QUALITY CARE The Foundation administers a comprehensive continuum of care that provides critical support to improve a patient’s quality of life. Patient service programs and resources are available to ALS patients and caregivers in the Chicagoland area – at no cost. In 2011, the Foundation: ▪ Conducted 724 patient visits by an ALS Nurse Consultant or Social Worker ▪ Provided financial assistance to 26 families through the Ralph Russo Grant Patient and Family Services Program ▪ Awarded Respite Grants to 17 families ▪ Facilitated support groups for 348 patients and caregivers ▪ Provided transportation to 43 families to the Les Turner/Lois Insolia ALS The Les Turner/Lois Insolia ALS Center at Northwestern in Chicago is considered one of the nation’s top treatment centers for ALS patients. A multi-disciplinary team approach provides comprehensive treatment and support of people with ALS, their families and caregivers through the Stuart Rosen Transportation Fund. In 2011, there were a total of 585 patient visits to the Center. Members of the ALS healthcare community from across the nation gathered for the Foundation’s 2011 ALS/MND Nursing Symposium to share ideas and best practices. More than 125 nurses, clinic coordinators and allied health professionals, a record number, were in attendance. The Foundation honored Dan Weiler and Ana Pagan as our Patients of the Year, Doug McConnell as our Volunteer of the Year, and Nia Orosco as our Junior Volunteer of the Year, at the 2011 Education Forum and Volunteer Reception. Drs. Teepu Siddique and Lisa Wolfe, both of Northwestern Medicine, served as guest speakers. The Les Turner ALS Foundation’s Home Care and Community Services Team is the only ALS in-home nursing consultation service in Chicagoland, and one of only a limited number throughout the country. The Team serves as an exemplary model for total ALS care and sets an international precedent for the future of similar programs. The members of the Foundation’s Home Care and Community Services Team have more than 100 combined years of experience caring for ALS patients and their families. 5 CELEBRATE PHILANTHROPY Most of the Foundation’s supporters are individuals – Run4ALS Program – Avid runners and weekend people like you who give their money, time and effort to warriors alike are fighting Lou Gehrig’s disease one bring hope to patients and families living with ALS. race at a time. In 2011, 524 runners raised more than $75,000! One of the program’s signature events, Hope Through Caring Award Gala – Honors Strike Out ALS 5K, gives participants the rare opportunity those who have shown outstanding commitment to to run and finish on the warning track at U.S.