Annual Report - Epilepsy Foundation of Greater Chicago
Transcription
Annual Report - Epilepsy Foundation of Greater Chicago
Annual Report 2010 www.epilepsychicago.org Public Outreach Professional Education & Training Increasing Epilepsy Awareness and Knowledge throughout Greater Chicago The Epilepsy Foundation of Greater Chicago is committed to educating the general public about epilepsy, whether or not they have a personal connection to the disorder. The Foundation reaches out to a wide variety of people including, school nurses who may not know the appropriate care for someone having a seizure, parents who want to be aware of the latest treatments available for their child with epilepsy, an employee unclear of their disability rights under the new ADA, or even someone who simply wants to become a fan of the Foundation on facebook. The Foundation’s educational programs and outreach initiatives are geared to reaching out to as many people as possible. In the 2010 Fiscal Year, the Foundation’s Director of Education gave 155 presentations about epilepsy and represented the Foundation at numerous educational programs across its 43 county service area. In total, 6,079 people attended these presentations/programs, a 12% increase over the FY2009 attendance record. These presentations focused on a variety of subjects and would cater toward the specific demographic of those attending the presentations. For example, the “Seizures and You: Taking Charge of the Facts” program was designed to educate the general teen population about epilepsy and was presented to schools across the greater Chicagoland area. The “Seizure Training for School Personnel” and “Managing Students with Seizures Nurses Program” presentations focused on educating student caregivers on the best practices for 2 caring for someone with epilepsy. While the majority of presentations were given to the academic community, other groups were also addressed. The Epilepsy Foundation had a consistent presence at many Chicago area Health Fairs and gave presentations to people whose employment is based on serving the general public, such as hotel staff. The Epilepsy Foundation of Greater Chicago and the Midwest Business Group on Health present Employment and the ADA What Employers Need to Know Wednesday, April 21, 2010 8:00 am - 10:30 am A free continental breakfast will be served Mid-America Club • 200 E. Randolph St. • Chicago, IL 60601 Along with these ongoing educational programs, the Foundation also addressed a time-sensitive and relevant topic to those impacted by a disability, such as epilepsy. The Americans with Disabilities Act was amended in 2009 and became the Americans with Disabilities Act Amendments Act (ADAAA). This new legislation was created to reinforce and enhance the workplace rights of people with disabilities and the Foundation hosted two seminars to address the new regulations, their benefits, as well as the myths that may still surround them. In October of 2009, the Foundation hosted “Employment and the (New) ADA: What you Need to Know.” This seminar focused on the ADAAA’s reinforced power that requires employers to comply with its obligation to protect workplace rights. The speakers, which included an attorney who specializes in employment law and an employee of the Mayor’s Office for People with Disabilities, clarified an employee’s workplace rights and spoke on the best ways to address your disability with an employer. In April of 2010, the second seminar was co-hosted with the Midwest Business Group on Health and addressed the same issues, this time, however to a crowd of employers. Making sense of the ADAAA and making sure your company is in compliance with the Act, along with the benefits of hiring someone with a disability, were among the key topics covered by industry experts. In total, 47 people attended these seminars. In January of 2010, the Foundation co-hosted with the Alexian Brothers Neurosciences Institute “Seizures, Spells, Epilepsy & Co-morbidities: Advances in Diagnosis and Treatment.” This semi- 3 • Gently ease the person to the ground. • Cushion their head. • If they are wearing glasses, remove them. • Loosen any tight neckwear, such a tie or scarf. • Turn the person on their side to keep their airway clear. • Track time. If the seizure lasts more than five minutes, call for medical assistance. • Check for epilepsy or seizure disorder ID. • Afterward, reassure the person. Allow him to rest, if necessary. Stay with the person until he is fully awake and reoriented. MY CHILD HAS EPILEPSY—NOW WHAT DO I DO? You may have heard epilepsy called different things. Because the word “epilepsy” can be a scary thing to hear, some doctors may refer to a “childhood seizure disorder” or just “seizures.” If your child has had two or more unprovoked seizures, however, that’s epilepsy. And yes, it can be scary. But armed with the right information, you can make choices that maximize your child’s safety and quality of life—and leave you with a feeling of control and empowement over epilepsy. lives may be affected by the frequency and severity of their seizures as well as by the effects of their medications. HOW CAN I HELP SOMEONE EXPERIENCING A SEIZURE? WHAT IS EPILEPSY? Epilepsy is a disorder of the nervous system characterized by recurring seizures that result in sudden, brief changes in the way the brain works. Epilepsy is not a disease, it is not a mental illness, and it is not contagious. But it is far more common than you may think. • DO NOT put anything in the mouth of the person experiencing the seizure. • DO NOT panic. • DO NOT give oral medications during the seizure. • DO NOT restrain the person. • DO NOT administer food or drink until the person is completely conscious. nar, held in the western suburbs, focused on issues such as ‘Epilepsy, Autism, & Behavioral Disorders,’ ‘Epilepsy & Pregnancy,’ ‘Epilepsy & Dementia,’ ‘Antiepileptic Drugs in the Treatment of Neurological Conditions’ and ‘Non Epileptic Seizures.’ Led by some of the region’s top epileptologists and neurologists, the seminar included a panel review and was intended for those working within the medical field (family practitioners, internists, psychiatrists, etc.). A total of 59 people were in attendance. The Foundation’s Marketing & Communications Department continued its commitment to raising awareness about epilepsy in FY10 and utilized different mediums to do so. Two issues of Epilepsy Connections, the Foundation’s magazine, were published--one in the fall of 2009 and the second in the spring of 2010. The magazine has a circulation of 15,000 and along with home mailings, it is distributed to hospitals and epilepsy centers in the Chicagoland area. Topics addressed in the issues’ articles included a review of the Foundation’s annual Camp Blackhawk; the FDA’s approval of the antiepileptic drug, Sabril; pregnancy and epilepsy; living with epilepsy as a college student; puberty and epilepsy; and more. The Foundation also partnered with the Danny Did Foundation to produce the publication Seizure Safety: A Publication for Families Facing the Challenges of Epilepsy. A central focus of Seizure Safety was to raise awareness and educate Epilepsy The Greater Chicago the community on Sudden Unexplained Death in Epilepsy (SUDEP), a rare but fatal consequence of epilepsy that little is known about. A diagnosis of epilepsy is a life-changing experience, both for the person receiving the diagnosis and for the parents and loved ones. Questions abound: What does this mean? Will our lives—and our child’s life—ever be the same again? Call for medical help if: • A seizure lasts for more than five minutes. • The person does not resume breathing after the seizure. • The person has one seizure after another. • The person is injured, pregnant, diabetic, or appears ill. SAFETY IS KEY No matter what level of impact the person with epilepsy experiences, safety is of the utmost importance. Whether your child is playing around the house, at school, out with friends, or even asleep in bed, keeping safe—by thinking ahead and planning ahead—can make all the difference. In this publication, we outline some easy ways that you and your child can be safe and lead a healthy and active life. nn ua l The answer is that most children living with epilepsy do go about their daily routines just like children who are not affected by epilepsy. They go to school, they play sports, they ride their bikes, they participate in activities that make life enjoyable. However, they also live with the knowledge that at any moment they could have a seizure and that the quality of their Over 130,000 people in the Greater Chicago area have epilepsy. Nationally, that number jumps to over three million, which is equal to the number of people with cerebral palsy, multiple sclerosis, and Parkinson’s disease combined. Chances are, we all know someone with epilepsy. Connections Epilepsy Spring 2010 Walk 2010 A undation 6 646 .org d.org EPILEPSY FIRST AID th Foundation was Chicagoans Mike ton following the Danny. The DDF’s ent deaths caused mainstreaming of home use that act or seizure activity, ing of communicaDEP between mednd the families of pilepsy. A p u b l i c a t i o n fo r fa m i l i e s fa c i n g t h e c h a l l e n g e s o f e p i l e p s y 10 ELP! S EIZ U R E safety A PUBLICATION OF ThE EPILEPSy FOUNdATION OF GREATER ChICAGO Television and radio media were also utilized. In April of 2010, ABC7’s Disabilities’ Reporter, Karen Meyer, did a segment on the Epilepsy Foundation’s suburban clinic. This clinic provides medical care and treatment to people with epilepsy who are unable to afford it. Debbie Flader, the Director of Clinical Outreach was interviewed and explained the goals and importance of running this clinic.Saturday, TracyMay Schultz, 8 • Wheaton Saturday, May 15 • Lincoln the Director of Education, was also interviewed onPark www.epilepsychicago.org • 1-800-273-6027 the Claire Woods Radio Show on WRAM 1410. This hour long program focused on the medical basics of epilepsy, as well as the social/emotional impact it can have on a person’s life. A 5K Walk/Run to Benefit the Epilepsy Foundation of Greater Chicago Epilepsy Foundation of Greater Chicago 17 North State Street, Suite 1300 Chicago, Illinois 60602 Everything You Ever Wanted to Know About PREGNANCY AND EPILEPSY (but didn’t know who to ask) Non-Profit Organization U.S. Postage PAID Permit No. 111 Chicago, IL www.epilepsychicago.org 4 Client Services Community Support Providing Support to the Epilepsy Community For those living outside of the city that are unable to travel to a hospital with a neurology department or even to the Epilepsy Foundation of Greater Chicago’s downtown office to meet with a case manager, throughout FY2010, the Foundation has managed a suburban Outreach Clinic in Elk Grove Village (featured on ABC7 News). This clinic, located at the Alexian Brothers Neurosciences Institute, provides care people with epilepsy, regardless of whether or not they have insurance. Open on average three days per month, in FY10 the clinic successfully scheduled 399 appointments for people with epilepsy. It is staffed by an Epilepsy Foundation case manager and visited by a neurologist to offer medical care and assistance. Patients visiting the clinic are also offered social services support from the Epilepsy Foundation’s case management team. These services include: information and referral, enrollment in patient assistance and charity care programs, and are informed of and encouraged to take part in other programs that the Foundation offers, such as employment services, advocacy, and education. The Epilepsy Foundation of Greater Chicago’s Support Groups continue to be a popular attraction for its clients and people whose lives are impacted by epilepsy. With 22 groups meeting on a monthly basis throughout FY10 (including two new ones in Evanston and St. Charles), the Support Group members, some who have been involved with the Foundation’s programs for several years, are able to enjoy one another’s company and knowledge while enhancing their social lives. Each group is geared towards addressing the needs of a specific demographic such as parents of children with epilepsy; adults, teenagers and seniors with epilepsy; and Spanish speaking people with epilepsy. Throughout FY10, the Foundation’s Young Adult Group, a support group that caters toward clients in their 20s who feel that their personal issues and needs are not properly being addressed in other adult groups, continued to grow. The Young Adult Group’s primary goal is to help its members build a social network as young adults that they can use beyond the Foundation’s scheduled monthly meetings. Charles Cochran, 23, a part-time employee and Young Adult Group member finds that meeting other people within his age bracket 5 who have epilepsy has been a very positive experience. “I’ve learned how to meet people and become more involved,” he says. “We do activities together as adults. Adults who have epilepsy,” Cochran says. Each month the group will either get together for a casual afternoon at the Foundation’s office, or will organize an outside activity, such as bowling, going to a Bulls game, or seeing a movie at the IMAX Theater. As time has progressed, these 20 somethings have grown close to each other and have developed friendships beyond their group’s meetings. The Foundation has also been supervising an adult support group that meets at Stroger Hospital once a month. This group is consistently well attended as it is led in both English and Spanish by one of the Foundation’s bilingual case managers. Three neurologists from the hospital attend the group so that they may be available to answer any medical questions the participants have. “I want to help them become educated about epilepsy,” says Rosario Rivares, the supervisor of the group, “in words they can understand… the doctors are wonderful and very knowledgeable.” The advantages of this group—the fact that it is offered in English and Spanish, plus the attendance of three renowned neurologists who serve on the Foundation’s Professional Advisory board—attracts a wide group of people. Their ages span from 24 to 82 years old, but they all have something in common: their desire to learn more about epilepsy and their eagerness to connect withothers who all share a common ground. The Epilepsy Foundation of Greater Chicago continued to strengthen its personal relationships with children impacted by epilepsy as they take part in its programs. The children range, not only in age, but in the levels to which epilepsy impacts their lives. Through their involvement in its programs, the Foundation focuses on helping them accept their condition, build relationships with those who share similar experiences, and develop a true sense of self worth. 6 In July of 2009, 50 participants between the ages of 6-18 years old took part in the annual weeklong venture to Camp Blackhawk at the Red Leaf Village in Ingleside, Illinois. This was the first year Camp Blackhawk was held at the Red Leaf Village and proved to be a big hit, both among the campers, as well as the Foundation’s two case managers who spent the week with them. The participants took part in traditional camping activities such as fishing, swimming, and arts and crafts, but were also able to take advantage of Red Leaf’s state-of-the-art facility and spent afternoons rock-climbing and riding a 100 foot zip-line. All activities were practiced in a safe and medically monitored setting. For some, this was their first taste of independence away from their parents. While this can be exciting, it may also be a little intimidating. The Foundation’s case managers developed solid relationships with the campers and their parents in the months leading up to Camp (or at Camp in years past) thus leading the campers and their families to feel comfortable when their week-long trip began. Along with the facility’s fully trained staff and campers, the Foundation’s case managers were also able to enjoy themselves and as the week progress their relationships with these young clients only grew stronger. As one camper’s mother noted, “Camp Blackhawk in the highlight of our daughter’s summer. She thinks about it all year.” Throughout the year, Shining Stars continued to attract and bring together teenagers living with epilepsy. Participants and their families met several times and went on various excursions including their highly anticipated trips to local sports games. Whether these teenagers were packed into Toyota Park watching the Chicago Fire, attending a Chicago Wolves game at the United Center, or at the Arena Center for a Chicago Sky game, these outings were a popular retreat and fun for everyone. The participants also had a great time immersing themselves in a friendly game of bowling, or even simply enjoying some pizza and a movie in the Foundation’s family room. No matter what the activity was, all of the participants were able to spend valuable time connecting with others their age living with epilepsy, without having to worry about any of the stigmas that might be associated with their condition. 7 Foundation Development Fundraising Events Financial Support Sustains Foundation’s Programs & Services In November of 2009, the Foundation launched its inaugural “Talk About It! @ Dinner.” This campaign was designed to encourage individuals to host their own dinner parties throughout Chicago and use that social activity to talk to their guests about epilepsy and to ask for donations. In total, the Talk About It! dedicated and committed dinner hosts raised over $50,000 with minimal help from the Foundation. On March 9, 2010 the Foundation held its first “Heroes Night Gala.” Nearly 350 people attended the event, which netted over $190,000. The Heroes Night Gala was developed as a way to honor the memory and legacy of the late Richard N. Rovner, MD. The Foundation presented a “Richard N. Rovner Epilepsy Hero Award” to Illinois State Senator Dan Kotowski and Brian J. Flynn. A “Richard N. Rovner Epilepsy Award” was also presented to the Rovner family by Dr. Rovner’s former colleague and Foundation Professional Advisory Chair, Michael C. Smith, MD. The award was accepted by Dr. Rovner’s son, Max. Dr. Rovner was also honored via a specially-produced memorial video featuring remembrances by some of his friends and colleagues. The event was a powerful evening as it honored three very special individuals who have meant so much to the Epilepsy Foundation of Greater Chicago and its cause over the years. The Epilepsy Foundation of Greater Chicago held two very successful fundraising walks this year, which had a combined net of over $163,000. These 5K Walks/Fun Runs were held on Saturday, May 8, 2010 in Wheaton, Illinois and on Saturday, May 15, 2010 in Chicago’s Lincoln Park. This is the tenth annual Greater Chicago Epilepsy Walk and records were broken both in the number of participants (1,864 – a 24% increase from 2009) and in the number of teams (165 – a 20% increase from 2009). 8 Revenue Sources - FY2010 Illinois Dept. of Healthcare and Family Services 29.40% 39.14% Other Grants United Way HluJs and OrganiLaMons Horporate GiNs FoundaMons and Orusts Individual GiNs 0.15% 11.16% Legacies and Bequests Investment Income 6.09% 6.88% Special Events 2.18% 2.96% 1.80% 0.37% Distribution of Resources - FY2010 6.98% 10.64% ,a.ent Services 10.40% 48.61% Community Services ,ro=essiona> ?duca.on and Araining ,uC>ic Dea>tE ?duca.on Fundraising 8.16% Management 15.21% 9 Statement of Activities - June 30, 2010 Unrestricted Revenues, gains and other support: Public support and revenue Clubs and organizations Corporate gifts Foundations and trusts Individual gifts Legacies and bequests $ Total public support and revenue 4,626 36,736 85,306 27,051 138,241 291,960 Other revenues Grants: Departement of Human Services Other grants from affiliate United Way Other Income Special events: Gross proceeds (net of direct costs of $161,989) In-Kind Goods and Services Investment income Total other revenues Total expenses 292,635 364,351 422 1,813 364,351 422 1,813 1,738,422 Expenses Program services Management and general Fundraising 675 $ 4,626.00 36,736 85,306 27,726 138,241 485,004 75,464 21,675 (2,267) 500,000 Total revenues, gains and other support 675 Total 485,004 75,464 21,675 (2,267) 946,462 Net asets released from restrictions: Restrictions satisfied by payments Temporarily restricted - 946,462 (500,000) (499,325) 1,239,097 907,423 76,922 117,118 907,423 76,922 117,118 1,101,463 1,101,463 Change in net assets 636,959 (499,325) 137,634 Net assets, beginning of year 221,925 704,523 926,448 858,884 205,198 1,064,082 Net assets, end of year $ 10 Statement of Financial Position - June 30, 2010 CURRENT ASSETS Cash Accounts receivable: Contributions and fees, including legacies and bequests Government Grants Prepaid expenses Security Deposit $ 626,293 256,407 202,033 7,960 9,916 Total current assets 1,102,609 Property and Equipment Furniture and fixtures Leasehold improvements Equipment 13,562 9,907 139,757 163,026 (156,219) 6,807 Less accumulated depreciation Other assets Contributions receivable 5,000 $ 1,114,416 $ 1,993 41,839 6,502 LIABILITIES AND NET ASSETS Current Liabilities Acccounts payable Accrued expense Deferred rent Total current liabilities 50,334 Net assets: Unrestricted Undesignated Board designated Total unrestricted Temporarily restricted 811,727 47,157 858,884 205,198 1,064,082 $ 1,114,416 11 Donors - July 1, 2009 to June 30, 2010 The following contributions to the Epilepsy Foundation of Greater Chicago were received during the fiscal year beginning July 1, 2009 and ending June 30, 2010. We sincerely regret any omissions or errors. $25,000 + Alexian Brothers Health System Brian J. and Michelle Flynn Donald and Beverly Flynn Illinois Department Of Human Services $10,000-$24,999 BMF Foundation Dean L. and Rosemarie Buntrock Foundation Kevin and Susan Flynn Jenner & Block LLP Lundbeck Inc. Pfizer The Wachovia Wells Fargo Foundation USG Corporation $5,000-$9,999 Arete Foundation Jeff Aronin Community Health Charities Elizabeth Morse Charitable Trust Enterprise Holdings Foundation Frank Erlain Tyrone Fahner Kurt and Linda Florian Robert and Patricia Flynn Jerome and Linda Girsch Joseph Holsten Jayne Thompson & Associates, LTD Law Office of Kupets & DeCaro, PC The Northern Trust Company The Oxford League, Inc. Paul & Joan Rubschlager Foundation Ilana Rovner Rush University Medical Center Dan Webb $1,000-$4,999 The Acorn Foundation Advocate Christ Medical Center Aileen S. Andrew Foundation Arthur Allen Allstate Giving Campaign John and Laurel Alyea Anonymous Patrick Callaghan Victor and Janet Casini Cat In The Hat Trading III, LLC Kevin Courtney Cull Family Foundation Cyberonics Grant and Joanna DePorter Illinois DECA Scott and Deborah Early Enterprise Rent-A-Car First Nonprofit Insurance Company Delilah Flaum Kenny and Barbara Flaxman Kevin Forde Foresters Community Initiative Jim Gassel Phil and Jill Gattone George J. and Theresa L. Cotsirilos Family Foundation Matt Greby Greenberg Traurig, LLP Barbara Greenstein Gregga Jordan Smieszny, Inc. Greg Grunberg Hanover Township Richard Horwich Tony and Tania Huamani Tim Iida Illinois Branch Independent Order of Foresters Indiana University ITW Foundation 3 for 1 Matching Gift Program JB & MK Pritzker Family Foundation K&L Gates LLP Michael Keenan John Landis Harry Leinenweber Patrick and Mary Leone Patrick Livney Kevin and Maria Lynch David Manning Richard McCann William McKenna John and Kelly McMahon Steven Molo Michael Moritz Mr. and Mrs. Philip Block Foundation Michael and Emer Mulvihill Robert Murphy David Nelson Northshore University Health System Northwestern Memorial Hospital George and Billie Paige Patricia and David Schulte Foundation, Inc. Joseph and Nancy Petrowski John and Manjula Pfingston Mike and Liz Pribaz Rosario Rivares Sean and Lynne Ross Eugene Ruark Michael and Celeste Scimo Gerald and Betty Seegers Keith and Elizabeth Skibicki Jean-Pierre Sommadossi Bradley and Paige Sullivan Thorn River Foundation UCB, Inc University of Chicago Children’s Hospital Brian Wiedenhoeft William Blair & Company Foundation James Zagel and Margaret Maxwell $250-$999 A/2 Gun/Tact/Sat & 005 Tact Unit 212 Abbott Fund Adventist Bolingbrook Hospital Robert and J.M. Alley Howard Alport Fred and Charlotte Alyea Amalgamated Bank Of Chicago Barbara Anasenes Athletico Peter and Sue Babilla David Bagley Bender Consulting Services, Inc. Lawrence and Alice Bernstein James and Nancy Blanche Philip and Judy Block Robert and Eleanor Bloom William and Nancy Boyk Theresa Brieske John Bross Karen Brozynski William Bruno Robert Buford Paquito Bugayong John Butler and John Vanderlinden Mary Cameli David Carson Central DuPage Hospital Victoria Chaney Chessboard Consulting, Inc. Mariah Christensen Mary Coclanes Chris Columbus Jeff and Kathy Conrad Steve and Lynn Corda Dawn Daniels Jim Danko Dennis and Sandra DeCaro Jonathan Defreytas Jeffrey Delheimer Barbara Dershin Julianne Diaz James Donnelley Matthew Dopp Mark Dupont Joan Eagle Charles Ealy John and Kristin Epstein Suzanne Faber Pam Farley Rosemarie Fates Catherine Feddor First Hospitality Group Ira Fishman Martin and Karla Flanagan Kurt and Louise Florian Friends Of Edward M. Burke Dominick and Susan Gatto Lauren Gottlieb Frederick and Janice Grede Lt Gregory Robert and Maureen Haga Ali and Alison Haghighat Catherine Haskins Frank and Joyce Healy Peggy Healy Irene Hogstrom and Mark Bragen Melinda Hosler Michael Hosler Jaffee Foundation Rich and Jane Jander Jewish Communal Fund Daniel and Caitlin Jisa Hellee Johanson Thomas and Le Anne Kadlee Michael Kamlet David and Geralyn Kendall Patrick King Richard Kirsch Kohl’s Casimir and Mary Kotowski Ian Larkin Jim Lee Legion Friends Myra Lipman Kathy Loftus Patricia Lopez Michael Love Robert and Peggy Lyons David Mack Tom Madden Kevin Mahoney Charles Margosian Edward and Fadua Maslak Lisa Maxwell Beth McClory David McCormick Jeff and Janell McDonald Tad McGwire Merchants and Manufacturers Bank David and Gail Mocklow James Montana Kristin Morrison Andrea Murphy Joe and Sue Murphy Terry Murphy Paul Nelson Mr. & Mrs. Nimmagadda Nobuyuki Iida Trust David O’Donovan Robert Olsen Olympia Fields Park District David Ortiz Julie Palles Loren Palmer Jay and Linda Pape Lembit and Carol Parik Mike Parilla Patricia Hurley and Associates, Inc. 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