THANK YOU for supporting Once In A Blue Moon which raised money for the Sydney Salem Golding Fund at Rainbow Babies & Children s Hospital. You can read more on the SSGF website.--> Click here Reply
Updates on awareness, educational and fundraising efforts supporting histiocytosis, pediatric cancer and neonate disease
August 1-3, 2007
Doubletree Guest Suites at Walt Disney World
2305 Hotel Plaza Boulevard
Lake Buena Vista, Florida
The National Conference on Histiocytic Disorders (NCHD) is a 3 day conference which will provide attendees with up-to-date information regarding histiocytosis research and treatment, as well as the social and psychological challenges of living with a rare disease. In addition, conference attendees will be ample opportunity for networking and connecting with other histiocytosis patients and families.
You can download copy of the conference agenda, read about the guest speakers and register online to attend the conference.
15th Annual Walk for Wishes
Benefiting Make-A-Wish Foundation of Northeast Ohio
Saturday, July 21, 2007
Cleveland Metroparks Zoo
Registration 7:30 am
Walk Start 8:00 am
Celebration 11:30 am
Walk for Wishes is a leisurely walk through the beautiful Cleveland Metroparks Zoo. The walk begins and ends at the zoo entrance. The course is fully handicap accessible and suitable for participants of all ages. The route distance is approximately three miles. All participants will receive one all-day ticket to the Zoo and Rainforest, breakfast, and lunch.
You can register online or sponsor a walker by going to the Walk for Wishes website. By raising $100 you will receive a Walk For Wishes t-shirt. Join the celebration and experience the joy of making wishes come true! If you have questions about the event, contact Development Officer, Kim Mantia at 216-241-3670 or email Kimm@makeawishohio.org.
Smiles for Sophie Bowling Night
Benefiting Smiles for Sophie
Saturday, July 21, 2007
Session 1: 7:00 - 9:00pm
Session 2: 9:30 - 11:30pm
Buckeye Lanes
24488 Lorain Rd.
North Olmsted, Ohio 44070
Sophie Quayle is a bright, energetic 4 year old girl who was diagnosed in February 2007 with diffuse intrinsic pontine glioma and has a tumor located within the brain stem. She lives in Avon Lake, Ohio, with her parents (Emily & Marc) & her baby sister (Sarah). She was initially diagnosed at Rainbow Babies & Children’s Hospital and has been undergoing treatment at St. Jude Children’s Research Center in Memphis, Tennessee. You can read more about Sophie and her brave journey on the Smiles for Sophie website -- www.smilesforsophie.blogspot.com.
100% of the proceeds from this event will be going to the Quayle family to offset the costs of Sophie’s care. Ticket prices are $10 per bowler and include 2 hours of bowling, rental shoes, food (pizza & snacks), & soft drinks. For advance ticket purchase, please contact Niki Haag at 440-979-0665 or email at michaelandniki@yahoo.com.
4th Annual Brunch for the Babies
Benefiting Providence House
Sunday, July 22, 2007
11:00 a.m. – 4:00 p.m.
Cleveland Metroparks Polo Field
Rt. 87 and Chagrin River Road
Moreland Hills, Ohio 44022
Enjoy a scrumptious brunch, refreshments, raffle prizes, VIP parking, all-day admission to the grounds, raffle prizes and shade/ringside seating for the Cleveland Grand Prix at the Chagrin Valley Hunter Jumper Classic.
Providence House is Ohio’s first and only 26-bed residential Crisis Nursery offering a round-the-clock residential crisis intervention program that provides an immediate placement solution for babies and children from newborn through age 5 in at-risk situations where they are in imminent danger of abuse or neglect.
Tickets are $100 for adults, $50 for children. For reservations or more information, call (216) 225-5739.
Rainbow Babies & Children’s Hospital at University Hospitals Case Medical Center announced today the creation of the Jennifer Ferchill Brain Tumor Center, established through a significant leadership gift from the John and Sharon Ferchill family.
“We lost our daughter, Jennifer, 25 years ago to a brain tumor,” said Cleveland-based real estate developer John J. Ferchill. “With this center dedicated to her memory, Jenny’s legacy will inspire hope for patients and their families for generations to come.”
Rainbow Babies & Children’s Hospital is devoted to conquering brain tumors in children. The treatment for brain tumors is complex, requiring specialized and personalized care. Brain tumors are the most common form of pediatric cancer, and despite advances in recent years, brain tumors have surpassed leukemia as the leading cause of cancer death in children.
Establishing the Jennifer Ferchill Brain Tumor Center will accelerate Rainbow’s membership in the NCI Pediatric Brain Tumor Consortium, a network of leading medical centers that evaluate promising new treatments for children with brain malignancies. The consortium currently includes no Ohio members.
The center will also expand Rainbow’s membership in the NCI Phase I clinical trials consortium to include pediatric patients. Rainbow’s membership in this program would allow pediatric patients in phase I clinical trials to receive unparalleled care close to their home and family.
John J. Letterio, MD, Chief of Pediatric Hematology/Oncology and Alan R. Cohen, MD, Chief of Pediatric Neurosurgery at Rainbow will co-direct the brain tumor center.
Ethan And Keane Denke
Ethan and Keane Denke are 8 month old twin boys from Sherman Oaks, California who both have been diagnosed with familial Hemophagocytic Lymphohistiocytosis (HLH). Both boys are receiving daily immunosuppressants and undergoing weekly chemotherapy at Children's Hospital Los Angeles while they wait for a bone marrow donor who matches 10 genetic markers (HLA markers).
A transplant requires matching tissue types between patient and donor. These tissue types are inherited, but 70% of patients do not have a matched donor in their family. Please spread the word and encourage families, friends and co-workers to register as bone marrow donors.
You also can read more about the Denke twins and learn how to register as a bone marrow donor on their website --
http://web.mac.com/xander.denke/iWeb/X%26C%20Home%20Page/PRIVYET%21.html
THANKS FOR YOUR HELP!!!
P.S. Remember to encourage friends and co-workers of Asian (especially Korean descent) to register to help Elyse Yu (www.elyseyu.com) find a bone marrow donor.