Support Groups are a great resource for people to maintain control over their lives, to give and take the wisdom and experience that comes from living with a devastating illness like, Sickle Cell Disease. We offer Youth, Adult, Family and Caregiver Support Groups to help them develop tools to regain a sense of control over their lives.
“I Am Not Alone” – Adult Peer Support Group
The Sickle Cell Adult Support Group provides adults with Sickle Cell Disease (SCD) a format to express their feelings, concerns, joy and pain, with others in a supportive, non-judgmental and confidential environment.
Who can attend?
Any adult 18+ years of age, with SCD can attend. The group participants are those diagnosed with Sickle Cell Disease (SCD) in the form of: SS, SC, SD, or Sickle Beta Thalassemia, plus, their adult family members and caregivers.
“Can You Hear me Now”? – Youth Peer Support Group
This Youth Support Group provides young people with Sickle Cell Disease a format to express their feelings, concerns, joy and pain, with others in a supportive, non-judgmental, and confidential environment.
Who can attend?
Anyone 12 to 17 years of age, with SCD. The group participants are those diagnosed with Sickle Cell Disease (SCD) in the form of: SS, SC, SD, or Sickle Beta Thalassemia.
“New Beginnings” – Teen to Adult Health Transitional Program
The teen years are a time of transition. This is especially true for young adults with a life threatening, chronic illness, such as SCD.
What is a transition program and why is it important?
Young adults with SCD, who have received all, or most, of their health care through a children’s hospital, or pediatric center, are faced with many challenges when they no longer qualify for pediatric care, due to their age. The Sickle Cell Council offers programs to help prepare young adults and their families, to make the transition to adult care.
What should you look for in a Transition to Adult Healthcare Program?
First, the program is designed to help young adults take responsibility for their own health care. This involves becoming knowledgeable about SCD, being able to communicate confidently with physicians, and being capable of making decisions about their care. Secondly, the program should provide tools to identify adult care resources before losing eligibility for care in the pediatric facility. This involves finding SCD specialists, primary care physicians, and working within insurance limits.
Who can attend?
Any young client transitioning from pediatric-to-adult care, from 18 – 25 years of age diagnosed with Sickle Cell Disease (SCD) in the form of: SS, SC, SD, or Sickle Beta Thalassemia.
Summer Camp – Ages 6 to 16 Double H Hole in the Woods Ranch
Every year, our families our encouraged to allow their children to attend the Double H Ranch summer camp, located at Lake Luzerne, NY. The Double H Ranch, co-founded by Charles R. Wood and Paul Newman, provides specialized programs and year-round support for children and their families, dealing with life-threatening illnesses.
All children are under the watchful care of fully trained staff 24/7 – including doctors, nurses, and camp counselors. A fully equipped med-clinic is on site with a general hospital within 10 minutes of the camp. Our children are transported to-and-from camp by our Executive Director and treated to 5 days of food and fun at no cost to our families.
"Client Family Day" - A day of Food and Fun for Families!
This is a social-recreational event held on a Saturday, near the end of summer, just before kids return to school, at a location chosen by the children in our program, by majority vote. In recent years, the Carlisle Sports Emporium has become a favorite choice of the kids. FREE for all participating Sickle Cell families! A day of Family, Food and Fun!