Madisons Foundation - Moms And Dads In Search Of Needed Support

Marcy Smith and Dr. Stuart Slavin presented at Grand Rounds at UCLA on behalf of Madisons Foundation. Their workshop topic: Giving Bad News to Parents. As is customary with Grand Rounds, Marcy's and Dr. Slavin's performance was both evaluated and critiqued by the audience of UCLA doctors. On a scale of 1-5 (five being perfect) the audience gave the workshop a 4.75, an excellent mark!

Photos: Annette Buhl 

The UCLA Masters Swim Club dedicated their annual one-hour swim as a fundraiser for Madisons Foundation. Thanks to their amazing efforts, this event was one of our most successful ever. Said one donor to a swimmer/participant, "You are one of a kind. Made of the best materials and spirit. You are better than gold or diamonds for you are priceless. I find it wonderful to watch the agreements people make with their lives. We should all be grateful to Madison for pulling us all up a notch by helping her."

With the proceeds from this event a donation is being made by Madisons Foundation to the Emerging Therapies Iniative in Pediatric Oncology, sponsored by the Jonsson Comprehensive cancer Center at UCLA. This program’s mission: reducing laboratory-to-bedside lead times for emerging therapies for children with rare tumors, a leading cause of death in children less than 14 years.

For the first time, Madisons Foundation will have summer internships at 2 major medical schools:  the David Geffen School of Medicine at UCLA and The St. Louis University School of Medicine.  Dr. Shahram Yazdani, Assistant Professor of Pediatrics, Director of Resident Education, Department of Pediatrics will continue to supervise the interns in Los Angeles; and Dr. Stuart Slavin, formerly of the UCLA School of Medicine and now Associate Dean for Curriculum and Professor of Pediatrics at the St. Louis University School of Medicine will supervise the interns.

The purpose of this project is twofold:

• First, is to provide accurate, readable and timely information for families with children diagnosed with rare diseases.
• Secondly, we desire to equip a new generation of physicians with the skills and the appropriate mindset to welcome children with rare diseases into their practices.

To accomplish this, an elective course/summer fellowship has been created for medical students between their first and second years. By taking this course, students work with specialists who treat a variety of rare diseases in children. They are assigned diseases by their mentors for which they will provide concise, readable summaries and identify web resources of additional information and support. Our students interact with both afflicted children and their families, and in doing so they address parents' specific concerns and questions and become familiar with the trials they face. All information is reviewed by faculty prior to being posted on the Foundation website. A nurse coordinator will act as liaison with the students, families and MADISONS Foundation staff.