2010 CPODD Family Retreat
"Reach for the Stars"
Pediatric MS Family Retreat
The University of Alabama at Birmingham (UAB) Center for Pediatric Onset Demyelinating Disease (CPODD) is hosting its 3rd Annual CPODD Family Retreat, June 17-20, 2010. The CPODD Family Retreat has 2 main goals: 1) to connect families with similar experiences and 2) to educate families about MS and how to live well with this chronic condition. The weekend program includes community building, education and recreation. It has been a huge success the past 2 years. So far, thirty families from six states have benefited from the Retreat.
The upcoming 2010 Family Retreat will be held a Children’s Harbor in Alexander City, AL. We hope to expand the availability of this event to five additional families. We will not only invite patients and families seen at CPODD clinic, but also take referrals from other neurologists and healthcare organizations.
Children living with MS rarely have the opportunity to associate with peers that also have a MS diagnosis. Similarly, parents and siblings lack opportunities to share their experiences with other families facing that challenges that MS bring. The Family Retreat allows families to connect with each other, share experiences and resources, and create a supportive community. At the retreat, community-building activities such as a drum circle and games are planned, but important networking and connections happen through casual conversation and time spent together.
Structured workshops led by clinical experts in MS are offered to patients and their families during the retreat. Popular topics include symptom management, treatment options, complementary/alternative therapies, on-going research, coping strategies, school interventions and health and wellness. Fun is also a priority of the Family Retreat. Activities include swimming, canoeing, boating, basketball, volleyball, ropes course, arts and crafts, team-building, campfire, yoga and dancing.
The Alabama-Mississippi Chapter of the National MS Society and other partners provide essential support to make this program possible. For more information, to volunteer, or to make a donation to the continuation of this special program, please contact Sarah Dowdy, Program Manager, CPODD 205-996-7633 or cpodd@peds.uab.edu.
About CPODD:
It is estimated that 2-5% of the 400,000 patients with multiple sclerosis (MS) experience their first symptoms before age 18. To care for these young patients, the University of Alabama at Birmingham Center for Pediatric Onset of Demyelinating Disease (CPODD) at Children's Hospital of Alabama was established in 2006 and was designated as a National Multiple Sclerosis Society "Pediatric MS Centers of Excellence". Six centers nationwide were included in this first-of-its-kind Network of Pediatric MS Centers of Excellence in the United States. They offer diagnosis and treatment to all children under the age of 18 who have MS and other central nervous system demyelinating conditions such as acute disseminated encephalomyelitis (ADEM), optic neuritis (ON), transverse myelitis (TM), other clinically isolated syndromes (CIS) and neuromyelitis optica (NMO).
CPODD is helping to set the standard for comprehensive care for pediatric MS. As a part of the Network of Pediatric MS Centers of Excellence, the center can offer the medical community the tools they need to help identify and treat MS early on. They also provide families a range of resources that have not been available previously to help them cope with the daily impact that MS has on their lives.