"Ohio Scleroderma News"
-1- Ohio Scleroderma News Scleroderma Foundation, Ohio Chapter - PO Box 846 - Hilliard, OH 43026-0846 -(866) 849-9030 Spring 2008 The Gifts You’ve Given We’re sending you this newsletter to thank you and share with you all that your donations have done for scleroderma patients in Ohio in 2007. We’ve been learning and earning, giving and receiving all year through patient educational seminars, fundraisers, support groups and new patient contact. Through the leadership of our president, Marianne Boyanowski, and our board of directors which is composed of volunteers from all over the state, we’ve added two new support groups to better serve patients and their caregivers. We’ve raised awareness of scleroderma in an effort to increase emotional as well as financial support for Ohioans affected by the disease. The Ohio chapter was able to give $20,000 at National Conference for research over-and-above our quarterly donation. In September, the national peer-review committee composed of leading scleroderma medical experts, awarded $1million in grants for continuing research into the cause and cure of this devastating disease. This is great, but we know we can do more. Your yearly $25 membership allows us to show others that our chapter is more than just a mailing list—we have real patients with real needs. And more importantly, you can provide the ideas, the heart, and the hands to grow all areas of our chapter with your direct participation through volunteering. Join us as we look back at 2007 and forward to all the potential of 2008. “Stepping Out to Cure Scleroderma” 2007 Boardman walk breaks all records The “Stepping Out to Cure Scleroderma” walkathon in Boardman once again was a record breaking event… surpassing even their expectations!! With Mother Nature providing a beautiful day and the perfect backdrop the 4th annual walk welcomed over 450 walkers. Grotto Clowns entertained participants bidding on fantastic auction items and helped sell 50/50 raffle tickets. Becky Kinser from Cleveland, Tennessee, had extraordinary support from her family when they attended the event and were the big winners of both 50/50 raffles!! Way to go! Becky’s family attended the walk to spread the word that their daughter had received a stem cell transplant and was doing very well. This successful fundraiser has proven itself to be an event where fun for patients, their families and friends is the order of the day. Again a big thank you to all sponsors and volunteers while none of this would be possible without you $47,000 was raised because of you. We recently heard from Becky and she is doing very well. Anyone who might want more information on her stem cell transplant, please call our office for more information and we’ll put you in touch with Becky. Thanks, Becky. -2- Dublin walk is hot – hot – hot! The Dublin “Stepping Out” walk was also a very successful event. Even though temperatures soared well over 90 degrees, more than 150 walkers braved the weather to attend the 5th annual event and walk for a cure. The Columbus Zoo entertained participants and while the tortoise and hare reminded us to take it easy in the warm weather, the albino boa constrictor and African armadillo seemed right at home! A special thank you goes out to WBNS-TV for promoting awareness and the walk, and to the Bissell family for their news story that aired the weekend of the walk. The “Bissell Bunch” walked in memory of their father Roger who passed away from Scleroderma complications in 2006. A huge thank you goes out to all of our wonderful sponsors and a heartfelt thank you for the donations made for the silent auction. Through their generosity and our volunteers we were able to raise $14,000! Last but certainly not least a special thank you to Jeannette Hughes and her fantastic family - your involvement is irreplaceable and your commitment invaluable, Thank You. 2008 Walks Planning for the Boardman and Dublin walks for 2008 is well underway and about to kick into high gear! Boardman – Saturday, June 7, 2008 – 9:00AM – Boardman Park Registration is $10.00. Raise $25 and get a free t-shirt (availability of all sizes is not guaranteed.) Dublin – Sunday, June 22, 2008 – 12:00 Noon – Coffman Park Registration is $15.00 for adults, $10.00 for 17 and under. Registration includes t-shirt. Raise $50 in donations and registration is free. Both walks are planning many other activities, like a gift basket auction, face painting, zoo animals, fundraising awards, and food! Plan to join us for one or both! Register online and find more info at www.steppingoutohio.org. Corporate/business sponsorships are still available for both events. Form your own team with family or co-workers and have fun while helping our cause. For details, call us at 866-849-9030. Educational Meetings in 2007 The Northeast Ohio Support Group along with the Cleveland Clinic hosted approximately one hundred people this past May at an educational symposium. Once again our guest speaker was Dr. Soumya Chatterjee (right, with event volunteers,) scleroderma specialist at the Cleveland Clinic, who spoke about the possible symptoms and complications of scleroderma. Dr. Chatterjee spent the whole day answering questions and helping us understand more about the management of our disease. The Medical University of Ohio also held an educational meeting for us in September with Dr. Ragheb Assaly, pulmonologist, Dr. Samer Khouri, Director, Heart Failure Clinic and Director, ECHO lab and Heart Station, and Dr. Bashar Kahaleh (left,) Rheumatologist. Drs. Assaly and Khouri spoke on scleroderma complications of the lungs and heart, and Dr. Kahaleh gave an update on the latest information and research on scleroderma. -3- Our sincere thanks to the doctors and their institutions for these wonderful opportunities to increase patient understanding of scleroderma. Also, many thanks to Danielle Brown from Gilead for her help on the Toledo meeting and to Sandra Eley and Carol Mayes-Kennedy for their help, and Actelion for their sponsorship of the Cleveland meeting. Don’t miss this summer’s first ever mini-conference in Ohio. We’ll have guest speakers from the Cleveland Clinic and the Medical University of Ohio, support group workshops, dinner and awards. Save the dates: August 8, 9, 10; OR August 14, 15, 16. Tell you friends and family; details will follow. New Fundraiser in 2007 June Kostandaras presided at the first annual Kostandaras Scleroderma Foundation Fundraiser held December 1, 2007. A big congratulations goes out to June for her very successful fundraiser in which they raised more than $15,000! Wonderful items were donated for auction as well as a raffle. Good company, a good meal, and a good time were had by all. Once again, a huge thank you to June and her wonderful family. New Support Groups This past year, Ohio was fortunate enough to start two more support groups. The newest group is located in Malvern, Ohio – the Canton area. Co-leaders Jaime and Curt Smith and Crys Burgett had their first meeting with over twenty people attending to hear guest speaker Scott Rike, a State Highway Patrolman living with scleroderma and featured in the “Scleroderma Voice.” The second group is the Dayton Area group, meeting in Huber Heights with support group leader Penny Davis. Penny’s group had a booth at an area craft show and not only raised awareness about scleroderma in the community, but also raised $300 for the chapter! Support Groups Malvern, Ohio First Thursday of every month, 6:30 p.m. Canton, Salem, Carrollton Area Support Group Malvern United Methodist Church, 121 W. Wood St, Malvern, Ohio 44644 at the church social hall. Contact Jaime Smith, 330-821-5568 or Crys Burgett, 330-627-7548 Cincinnati, Ohio 1:00-3:00 p.m. second Saturday of every month Cincinnati Support Group The Cincinnati Scleroderma Support Group is moving … Our new home will be in the Conference Center at the Mercy Hospital - Anderson Medical Office Building II (M.O.B. II). Map Hospital website Support Group Leader: Debbie Metz, (513) 232-5210, firstname.lastname@example.org Columbus, Ohio 7-9:00 p.m. third Wednesday of every month Columbus Support Group Panera on Mill Run. Support Group Leader: Amie Yaussy, (866) 849-9030, email@example.com continued… -4- Dayton, Ohio First Saturday of the month from 10:00 a.m. - 12:00 p.m. Dayton Area Support Group Our meetings are held at Grace Community Church, 5001 Fishburg Road, Huber Heights, Ohio. Support Group Leader: Penny Davis, 937-237-1952 - firstname.lastname@example.org Northeast Ohio th 4 Thursday of every month Northeast Ohio Support Group Our meetings are held in the restaurant of the Richfield Quality Inn, 4742 Brecksville Rd., Richfield, Ohio. Support Group Leaders: Mariann Boyanowski, 330-533-0552 and Monica Geschke, 216-251-2888. Email: email@example.com. Toledo, Ohio 7-9:00 p.m. third Thursday of each month Toledo Area Support Group St. Luke's Hospital, 5901 Monclova Road, Maumee, Ohio, in Room 2. Support Group Leader: Jerri Sue DeTray, 419-822-9693. Email: firstname.lastname@example.org. Youngstown, Ohio 6:00 p.m. on the first Monday of every month Youngstown Area Support Group Luciannos resturant, 1732 S Raccoon, Austintown, Ohio 330-792-5975. Come for dinner. Support Group Leaders: Leni Schulz, 330-654-2538 and Marilyn Panagopoulos, 330-318-6088 - email@example.com.