8th Annual National Family Retreat - Camp Sunshine Summer 2012

Save the Date:July 8-13

Dear DBA Families,

The Diamond Blackfan Anemia Foundation, Inc. (DBAF) is proud to host our eigth national family retreat. This retreat will take place during the week of July 8-13, 2012 at Camp Sunshine, which is located at Lake Sebago, Maine. Travel expenses are the families’ responsibility. Air carriers fly into Portland, Maine and ground transportation is provided by Camp Sunshine to the campsite. More details will follow shortly! Applications will NOT be available online until the second week in February (Please do not call Camp!).

The prospects of this week have many potential benefits. The time spent here will afford you and your family the opportunity to meet other families that have been affected by this disorder thus validating the DBA Foundation’s mission “...to share this knowledge, to inform, to lend support, and to communicate with all families of DBA patients.”  Camp Sunshine caters to families with various medical conditions and disabilities, and a full time medical doctor is on staff. They also plan daily activities for the entire family, and offer parents an opportunity to share their experiences and exchange information. Aside from the benefit of meeting other families, we have also obtained commitments from experts in the medical field to come and share their expertise and to update us on current research regarding DBA.

In the past, Camp Sunshine has proven to be an unforgettable experience for the families that have attended.  We are grateful to Camp Sunshine for extending an invitation to us once again this year.

So Save the Date, but please don't call camp! We will let you know as soon as the applications are available. Please register for the DBAFemail mailing list to get the most recent updates by clicking here and go to the bottom left hand corner of the page to sign up.

 

Sincerely,
Diamond Blackfan Anemia Foundation, Inc.
Dawn M. Baumgardner
(716) 674-2818

 

Knowledge and Friendships Flourish at Camp Sunshine

Since 1998, the DBA Foundation has proudly sponsored a week every other year at Camp Sunshine in Casco, Maine. Camp Sunshine is a retreat for children with life threatening illnesses and their families. In 2008, more than 40 DBA families attended Camp Sunshine during the week of July 13 through July 18th. Attendance at this amazing Camp is free of charge for participating families, who are only required to provide their own transportation to Camp. There is 24-hour medical support available at camp. This year we were fortunate enough to have Camp Sunshine's Medical Director, Andrew Eichenfield, M.D. as our camp doctor.

For many patients and families, Camp Sunshine is the first time they have the opportunity to meet anyone else who has DBA or other families with a DBA patient. For returning families, Camp Sunshine offers an opportunity to reconnect with old friends. The week is full of fun and education and is a wonderful opportunity to make new friends and reconnect with old.

The DBA Foundation’s mission is, in part, to educate families about DBA and related issues. Consistent with this mission, the DBA Foundation proudly presented the following lectures at Camp Sunshine in 2008:

Blanche P. Alter, MD, MPH, National Cancer Institute, Clinical Genetics Branch, Division of Caner Epidemiology and Genetics, “DBA and Cancer" and "The NCI Study of Inherited Bone Marrow Failure Syndrome (IBMFS).”

Deborah Chirnomas, MD, Children’s Hospital Boston, “Iron Overload, Treatments and Measurements.”

Steven Ellis, Ph.D., Research Director, DBA Foundation, University of Louisville, “Direction of DBA Research and Overview” and “Leucine and DBA.”

Josu de la Fuente, MD, Saint Mary's Hospital, London, "Prednisone and DBA" and “DBA and the United Kingdom.”

Hanna Gazda, MD, Children's Hospital Boston, “Genetics and DBA Discovery.”

Jeffery Lipton, MD, and Adrianna Vlachos, MD, Schneider Children’s Hospital,“Treatment and Management of DBA (including Bone Marrow Transplant)", "DBA Alternative Treatments" and "Preimplantation Genetic Diagnosis (PGD) and Invitro Fertilization (IVF)."

These generous doctors and scientists also made themselves available for one-on-one consultations with families. Also in attendance were Sally Owens and Gretchen Simmons from the Division of Blood Disorders, Centers for Disease Control and Prevention. Their focus group gave parents an opportunity to voice their opinion about the availability and content of DBA educational materials.

In addition to the educational component of Camp Sunshine, there are formal and informal opportunities for families to come together and share their experiences related to living with DBA. There are groups sessions led by Camp Sunshine Psychosocial Director, Nancy Cincotta, L.C.S.W. Nancy's experience and compassion create an wonderful opportunity for families to connect and to heal. Additionally, many families spend time getting to know one another informally over meals, on the porch in the evening, or during scheduled social events.

The children also enjoy Camp Sunshine. Younger children spend their days in the nursery with a bevy of volunteers whose sole mission is to entertain and care for these children. Older children are grouped by age and spend their day like typical summer campers – camping out overnight, playing volleyball, miniature golf, and basketball, swimmin, roasting marshmallows, and making new friends and reconnecting with old.

And then, there is the Love Cup! The adults and teenagers group into different teams and engage in a series of competitive games, with the Love Cup trophy being awarded to the winning team at the end of Camp. The teens proudly took home the trophy in 2008. Attempts by the adults to bribe the judges with chocolates, beverages, and other trinkets all failed this year in the face of spirited teenagers. The adults will need to up the ante or the performance in 2010!

No Camp would be complete without a talent show, and, in fact, there are two at Camp Sunshine. The children have an opportunity to showcase their talents on stage in front of everyone. From the youngest children whispering a song into the microphone to older children playing the piano or doing a dance routine, there is an opportunity for all who are interested to display their amazing talents. The adults, on the other hand, get to display their vocal talents during an adults-only karaoke night. Participation in the karaoke is technically voluntary.

The next DBA week at Camp Sunshine will be during the Summer of 2010. Applications will be posted on the Camp Sunshine website in January 2010.

For more information about Camp Sunshine, please see: http://www.campsunshine.org/