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Celebrating Strength Celebrating Strength Annual Report 2013 Advancing scientific research Providing care and support Increasing awareness and education 159669 Annual Report.indd 1 4/18/14 6:55 AM About ALS Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s disease or motor neuron disease (MND), is a progressive disease that causes muscle weakness, difficulty speaking and swallowing and generally, complete paralysis. In most cases, while the body continues to deteriorate, the mind remains unaffected. There is no known cure for ALS and once diagnosed, patients typically live only three to five years. Mission Statement The mission of the Les Turner ALS Foundation is to: advance scientific research into the causes, treatments and prevention of ALS; provide people living with ALS, their families and caregivers exceptional clinical care and support services; and increase awareness and education of ALS. 159669 Annual Report.indd 2 4/18/14 6:55 AM Les Turner ALS Foundation Annual Report 2013 Message from the President and the Executive Director Dear Friends, You may have noticed the Foundation got a new look in 2013! We are so grateful to the marketing firm of Ogilvy & Mather Chicago for adopting us as their pro-bono client and making this new look possible. We hope you like it as much as we do! Be on the lookout this May for a powerful marketing campaign designed by Ogilvy to commemorate ALS Awareness Month. Harvey Gaffen Our facelift was officially unveiled in September at the 2013 ALS Walk President for Life. For those of you who were able to join us, you know it was a day filled with inspiration and hope. It was also our most successful year ever, with more than 6,500 members of the ALS community gathered at Soldier Field who raised a record-breaking $942,000! We know that we cannot fight the battle against ALS alone. The Foundation partnered with the ALS Association and MDA in November to host the 8th annual ALS Nursing and Allied Healthcare Professional Symposium. More than 250 ALS healthcare professionals from ALS centers around the world filled sessions to capacity and heard the most Wendy Abrams recent updates on ALS research and clinical care. Executive Director We take great pride in our financial accountability. In 2013, the Foundation was awarded a four-star rating by Charity Navigator – the highest rating possible. You can feel confident we take your generosity very seriously and take great effort to spend wisely, the outcome of which is outlined in this report. We are proud to share these achievements with you, because they would not be possible without you. In 1977, the friends and family of Les Turner envisioned a world free of ALS. Today, we are still working hard to see that vision realized and we would like to thank you for inspiring us every day. We are inspired by your dedication. We are inspired by your generosity. But mostly, we are inspired by your strength. We celebrate your strength and the strength of the ALS patients and families we serve. We promise never to stop working until there is a cure. 3 159669 Annual Report.indd 3 4/18/14 6:55 AM Les Turner ALS Foundation Annual Report 2013 Advancing Scientific Research Celebrating Strength In Research Funding medical research into the cause, treatment and cure for ALS has been a fundamental goal of the Les Turner ALS Foundation since its inception in 1977. The Foundation’s first major achievement was the 1979 opening of the nation’s first laboratory dedicated solely to ALS research at Northwestern University Feinberg School of Medicine. The Foundation remains affiliated with Northwestern and continues to fund cutting-edge research. It is only through scientific research that the Foundation can provide ALS patients of today hope for tomorrow. Complex Genetics of ALS and Related Disorders Major 2013 Accomplishments: Teepu Siddique, MD Further study of UBQLN2 and SQSTM1 suggested that both affect the ubiquitin- This laboratory is focused on understanding the proteasome and autophagosome-lysosome systems in ALS. This is an important link between neuronal function and the disease state, ALS. Additional studies processes by which ALS develops so that rational showed that ubiquilin2 can be manipulated to reduce the toxicity of the SOD1 and effective treatments can be developed. Led by gene in cell culture, as well as prolong survival in the SOD1 mouse. Dr. Siddique since 1991, he and his colleagues carry out a wide range of molecular genetic experiments to The lab’s approach to rational treatment based on disease mechanisms led to understand the causes of ALS and identify biomarkers identification of several new compounds to reduce toxic loads of SOD1 in SOD1- ALS. These will be tested in the SOD1 mouse model and then used specifically to to diagnose and track ALS progression. treat patients with mutations in the SOD1 gene. There are more than 200 SOD1 families with at-risk individuals who could potentially benefit. The lab’s research focuses on the complex genetics of inherited (familial) ALS and related disorders, Testing of Acthar and other forms of ACTH resulted in a nearly statistically significant increase in life span for SOD1 mice, and more importantly, a 50% employing a wide range of strategies to identify several reduction of SOD1 protein in spinal cords of SOD1 mice, providing another genes that cause ALS, including the SOD-1 gene. Dr. potential therapy for SOD1 patients and people at risk in their families. Siddique has also developed animal models for SOD1- and ALSIN-ALS. In 2011, Dr. Siddique and his team identified a faulty protein pathway, ubiquilin2, as the first known cause of all types of ALS. Upper Motor Neurons and Early Detection Major 2013 Accomplishments: ALS Markers Discovered a way to isolate and visualize the diseased upper motor neurons and, P. Hande Ozdinler, PhD for the first time, dressed them in a green fluorescent jacket making them easier to study. This laboratory focuses on the upper motor neurons, which reside in the brain, and connect with motor Developed the first in vivo drug-screening platform using motor neuron survival neurons in the spinal cord to initiate and control as a read-out for success. movement. Cortical and spinal motor neuron Developed approaches for direct gene delivery into the diseased upper motor populations progressively degenerate in ALS and neurons. therefore require immediate attention. Hosted the 3rd Annual Symposium on ALS and NeuroRepair titled: “Common Identifying early detection markers in ALS and and Unique Biology Between Cancer and Neurodegeneration” at Northwestern developing neuron-specific genetic therapeutics to University. upper motor neurons is the primary focus of this Awarded over $2.5 million through three grants: two from the National Institutes laboratory. Since its establishment in 2008, the lab, of Health (NIH) and one from the ALS Association. With more than 70,000 led by Dr. Ozdinler, has received multiple awards and grant applications submitted annually, to receive two NIH grants from the same developed numerous new research tools, such as a study section and on the first application is a remarkable testament to the lab’s novel reporter model, and an in vitro, small-scale drug achievements and vision for the future. screening platform using pure populations of upper motor neurons. Donor Appreciation Night Each year, the Foundation hosts a special night for donors to meet the members of the labs and take personal tours. The 2nd annual Donor Appreciation Night was held in November and more than 40 friends of the Foundation got a firsthand look at this amazing research. The Foundation also honored Ogilvy & Mather Chicago with its Corporate Partner Award. 4 159669 Annual Report.indd 4 4/18/14 6:55 AM Then & Now 1 small laboratory 1979 4 scientists on staff 2 state of the art research facilities 2013 29 scientists on staff 159669 Annual Report.indd 5 4/18/14 6:55 AM Les Turner ALS Foundation Annual Report 2013 Providing Care and Support Celebrating Strength In Patient Care The Les Turner ALS Foundation patient service programs help people with ALS (PALS) and their loved ones cope with the day-to-day challenges of living with a chronic disease. The Foundation offers a comprehensive continuum of care that provides critical support to improve a patient’s quality of life. In April, the Foundation honored Richard “Dick” Conducted 719 patient visits Allocated financial assistance Jacobson as Patient of the Year and Mike “Mish” to 185 unique PALS and 154 grants to 15 PALS through Shedlock as Volunteer of the Year at the 2013 loved ones by an ALS Patient the Ralph Russo Patient and Education Forum and Volunteer Reception. and Family Advocate Family Services Grant Program In November, the Foundation, in partnership with Northwestern Medicine, the ALS Association and Awarded 18 PALS grants Facilitated monthly support the MDA – ALS Division, hosted its eighth ALS/ through the Dan Nelson ALS groups to 436 PALS, family and MND Nursing and Allied Healthcare Professionals Respite Grant program friends Symposium. A record 250 registrants from ALS centers all over the world participated in the three day conference. Nurses, clinic coordinators and other allied Provided transportation to 30 healthcare professionals were given the opportunity to PALS to the Les Turner/Lois explore new trends, share current practices and review Insolia ALS Center through the resources that they could bring back to their teams. Stuart Rosen Transportation Fund In December, members of the International ALS and MND community gathered for the Annual Meeting of the International Alliance of ALS/MND Associations Les Turner/Lois Insolia ALS Center and the International Symposium on ALS/MND in The Les Turner/Lois Insolia ALS Center at Northwestern in Chicago is Milan, Italy.
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