support education research Officers: Jerry Lance President Arnold Brownstein Vice President Ruth Greenspan Secretary Stacy Alonso Treasurer Board Members: Lonny Anger Courtney Caliendo Christine Catoggio Rachel Ebert John Karay Chris Miller Sheppard Parr Noel Weinstock Ferne Robin Executive Director October, 2015 southeast florida chapter I want to invite you to join me in supporting Stepping Out to Cure Scleroderma, our annual fundraising event at Tradewinds Park, 3600 West Sample Road, Coconut Creek, FL 33073 on January 30, 2016. The walk will benefit the Scleroderma Foundation, Southeast Florida Chapter and people living with the autoimmune disease scleroderma. You may not have heard of scleroderma before, but I can tell you that it is a very debilitating chronic illness that affects about 300,000 people in the United States. This event is a gathering of those suffering from scleroderma, their caregivers and their supporters. We come out to the park to walk and have some fun. Over the years this has been so important to our organization as a way to share stories and come together as a family. Our chapter is actively involved in the Greater Fort Lauderdale Chamber of Commerce, the Boca Raton Chamber of Commerce and the Broward Coalition on Aging. In this package you ll find all of the details of the event, including information on the disease scleroderma, the Scleroderma Foundation, and most importantly, what you can do to help! There are numerous sponsorship levels and benefits, which you can read more about in the information provided. Please note that all expenses for this mailing were donated. I ll follow up with you in the days ahead. Sincerely, Ferne Robin Executive Director 3930 Oaks Clubhouse Drive #206 Pompano Beach, FL 33069 Phone: 954.798.1854 Toll Free Fax: 1.888.316.6188 sclerodermasefl@gmail.com www.scleroderma.org/sefl
Stepping Out To Cure Scleroderma Fact Sheet When: Where: What: Benefitting: How: Who: Saturday, January 30, 2016 starting at 9:00am Tradewinds Park 3600 West Sample Road Coconut Creek FL 33072 Annual Stepping Out To Cure Scleroderma Walk This event will benefit the Scleroderma Foundation, Southeast Florida Chapter to support local programs for people living with scleroderma, their families and caregivers, as well as to help support important research to find a cure for this disease. For sponsorships, please contact Ferne Robin, 954-798-1854 or fernerobin@scleroderma.org We are grateful to our Board Members who work so hard to make things happen: Jerry Lance, President Ruth Greenspan, Secretary Arnold Brownstein, Vice President Stacy Alonso, Treasurer Board Members: Christine Catoggio John Karay Noel Weinstock Courtney Caliendo Lonny Anger Rachel Ebert Chris Miller Shepp Parr For More Info: Ferne Robin, Executive Director Scleroderma Foundation, Southeast Florida Chapter 954-798-1854 fernerobin@scleroderma.org
Presenting Sponsorship $5,000.00 Your company s name and logo will be on the front cover of all registration brochures Logo featured as Presenting Sponsor on all Stepping Out to Cure Scleroderma printed materials. Featured as a Presenting Sponsor in e-newsletter, sent weekly to membership starting December 1, 2015. Sponsor recognition in local publicity efforts. Onstage recognition. Opportunity to place promotional items at venue. Opportunity to place promotional items at venue. Your company banner on site printed courtesy of the Scleroderma Foundation. Exclusive walk finish line sign, plus signage along walk route. Company will be invited to participate in the Team Challenge aspect of the event and enter 30 walkers at no cost. Gold Sponsorship $,2500.00 Your company s name and logo will be on all registration brochures Logo featured as Gold Sponsor on all Stepping Out to Cure Scleroderma printed materials. Banner display at event (provided by sponsor). Featured as a Gold Sponsor in e-newsletter, sent weekly to membership starting December 1, 2015. Onstage recognition. Opportunity to place promotional items at venue. Sponsor recognition in local publicity efforts Signage along walk route Company will be invited to participate in the Team Challenge aspect of the event and enter 20 walkers at no cost. Silver Sponsorship $1,000.00 Logo featured as Silver Sponsor on all Stepping Out to Cure Scleroderma printed materials. Banner display at event (provided by sponsor). Featured as a Silver Sponsor in e-newsletter, sent weekly to membership starting December 1, 2015. Onstage recognition Sponsor recognition in local publicity efforts Opportunity to place promotional items at venue. Company will be invited to participate in the Team Challenge aspect of the event and enter 10 walkers at no cost. Vendor Sponsorship $500.00 Logo featured as Sponsor on all Stepping Out to Cure Scleroderma printed materials. Featured as a Sponsor in e-newsletter, sent weekly to membership starting December 1, 2015. Onstage recognition Sponsor recognition in local publicity efforts Opportunity to place promotional items at venue. Company will be able to enter 4 walkers at no cost Food/T-Shirt Sponsorship $250.00 Logo featured as Sponsor on all Stepping Out to Cure Scleroderma printed materials. Featured as a Sponsor in e-newsletter, sent weekly to membership starting December 1, 2015. Onstage recognition Sponsor recognition in local publicity efforts Opportunity to place promotional items at venue. Company will be able to enter 2 walkers at no cost.
About Scleroderma An Overview Scleroderma, also known as systemic sclerosis, is a chronic connective tissue disease generally classified as one of the autoimmune rheumatic diseases, such as lupus, rheumatoid arthritis, and multiple sclerosis. The disease stems from the over-production of collagen in the body that creates hardening (sclerosis) of the skin (derma) and internal organs, including the heart, lungs, kidneys, and gastrointestinal track. The word scleroderma comes from two Greek words, sclero meaning hard, and derma meaning skin. Hardening of the skin is one of the most visible manifestations of the disease. Scleroderma may take several forms, and the severity, symptoms and complications associated with the disease vary considerably among patients. It is estimated that approximately 300,000 people in the United States have scleroderma. Frequently Asked Questions Is scleroderma contagious? Scleroderma is not contagious, nor is it infectious, cancerous or malignant. How serious is scleroderma? The symptoms of scleroderma vary greatly from individual to individual, and the effects of scleroderma can range from mild to life-threatening. The seriousness will depend on what parts of the body are affected and the extent to which they are affected. A mild case can become more serious if not properly treated. Prompt and proper diagnosis and treatment by qualified physicians may minimize the symptoms of scleroderma and lessen the chance for irreversible damage. How is scleroderma diagnosed? The diagnostic process may require consultation with rheumatologists and/or dermatologists, and require blood studies and numerous other specialized tests depending upon which organs are affected. Who develops scleroderma, and when? As with most autoimmune diseases, scleroderma primarily affects women more than men at a ratio of approximately 4 to1. Most commonly, the onset of the disease happens between the ages of 25 and 55 years, but children and teens can also be affected.
What causes scleroderma? The exact cause or causes of scleroderma are still unknown, but scientists and medical investigators in a wide variety of fields are working hard to make those determinations. What is the treatment for scleroderma? At the present time, there is no cure for scleroderma, but there are many treatments available. Some are directed at particular symptoms, such as kidney or lung involvement. Some treatments are directed at decreasing the activity of the immune system. Because there is so much variation from one person to another, depending on severity, progression, and the organ systems involved, there is great variation in the treatments prescribed. What Scleroderma Looks Like Jessica is a twenty-six year old woman in the prime of her life. She can no longer button her clothes, prepare her food or open a bottle of water. She is often asked insensitive questions about why she looks the way she does. The things in daily life that we take for granted are a never ending challenge for her. Her life is not what she dreamed it would be when she was a little girl. The hardening of the skin that you see in these pictures doesn t reveal what is also happening to the body internally. You can help Jessica and the hundreds of thousands like her by being a sponsor of the Twelfth Annual Stepping Out to Cure Scleroderma Walk on January 30, 2016.
About the Scleroderma Foundation, Southeast Florida Chapter Based in Broward County, the Scleroderma Foundation, Southeast Florida Chapter has been advancing the three-fold mission of the organization for more than 15 years. Serving Miami-Dade, Broward, and Palm Beach counties, the Chapter provides education programs for people living with scleroderma and their families, offers peer-to-peer support through organized support groups, raises awareness of the disease among the general public, and engages with the local medical community. The Southeast Florida Chapter engages in fundraising to support its local patient support programming, and contributes funds to support the Scleroderma Foundation s Peer Reviewed Research Program. The Chapter operates under the auspices of the national Scleroderma Foundation and as such, is a 501(c)(3) nonprofit organization registered in the State of Florida. Contact Information: Ferne Robin, Executive Director Scleroderma Foundation, Southeast Florida Chapter 3930 Oaks Clubhouse Drive #206 Pompano Beach FL 33069 954-798-1854 sclerodermasefl@gmail.com About the Scleroderma Foundation (National Organization) The Massachusetts-based Scleroderma Foundation is the national organization serving the scleroderma community, including those living with scleroderma, their families and friends, and healthcare professionals working in the field of scleroderma research and treatment. It is a 501(c)(3) nonprofit organization with a network of 23 chapters and 150 support groups throughout the United States and Puerto Rico. The Scleroderma Foundation is the largest nonprofit funder of peer-reviewed medical research, making available at least $1 million each year in new research grants to find the cause, better treatments, and a cure for scleroderma. The Scleroderma Foundation has been awarded the highest rating of four stars by the independent nonprofit watchdog group, Charity Navigator, for six consecutive years. Scleroderma Foundation, Inc. 300 Rosewood Drive, Suite 105 Danvers, MA 01923 800-722-HOPE, www.scleroderma.org