WORLD RARE DISEASE DAY EFFORTS
The 1st World Rare Disease Day took place Saturday, Feb 28, 2009 with efforts led by children across the country. The Project was proud to participate and more compelled by the activities that families and organizations throughout the US developed to help build greater awareness of rare disease.
World Rare Disease Day was an opportunity for local communities to build greater awareness about the prevalence of rare disease in children around the world. Numerous organizations participated, many rare diseases were supported and the collective efforts of these businesses, children and their families exceeded expectations. We thank them for their support, their time, their commitment, compassion and willingness to make a difference. Please join us as we promote some of those efforts, read their stories, share in their successes, and contact us with any additional efforts that you would like to be included.
WORLD RARE DISEASE DAY EFFORTS FROM ACROSS THE COUNTRY – Kids helping kids
KIDS CAN MAKE A DIFFERENCE!
St. Edward The Confessor School
Led by 6th grader, Jackson Watkins, World Rare Disease Day was a big success in Dana Point, CA. With the generosity of students, parents, and staff from St. Edwards School Parish Family, the ‘Change for Change’ efforts raised $762 on Friday in pennies, nickels, dimes, and quarters, and even some bills. Eli Lilly, the pharmaceutical company, matched the first $500 after seeing the efforts of the children, and Albertsons in Laguna Niguel, CA waived the coin changing fee from Coinstar, providing an additional $54 to the kids efforts. The total amount raised came to $1262. The success of this program would not have been possible without the guidance and encouragement from the head master Mrs Sharon Rands and the staff of St. Edwards.
Albany High School, CA and their efforts
Albany High School, CA and their ‘Change for Change’ efforts taking place to help raise awareness for World Rare Disease Day!
Harbour Surfboards, joined World Rare Disease Day efforts by collecting change from customers, educating them about rare disease in children. “As a parent of a child with a rare disease, I understand the importance of this day and our efforts to create greater public awareness about rare disease in children,” stated Kris Howsen. “If we can introduce rare disease to all our customers, we will ultimately educate hundreds of people who were unaware before today! This is important and necessary, and we are glad to be part of these national efforts.” Harbour Surfboards matched all the money collected during World Rare Disease Day, February 28, 2009.
Thousands Educated about Rare Disease throughout Pennsylvania
The University of Scranton students and educational staff hosted a bake sale to garner support for World Rare Disease Day. Their efforts generated over $200 to benefit children with rare disease. Led by Kathleen Covey, a mother of a daughter with a rare disease and University of Scranton professor, other organizations within her community also participated. Lamar Advertising donated billboards on highways throughout PA promoting World Rare Disease Day, encouraging people to get involved. All Saints Academy, Scranton also agreed to participate, to build awareness about the prevalence of rare disease. These efforts throughout PA educated thousands about rare disease and the importance of education and advocacy.
The following schools and businesses participated in the 1st World Rare Disease Day, February 28, 2009. Thanks to their efforts thousands of children, families and businesses have been made aware of the prevalence of rare disease in children across the country and around the world. The Project is honored to be affiliated with these kids and the organizations that supported them, and look forward to planning larger efforts around the country for World Rare Disease Day 2010.
St. Mary All Angels
Aliso Viejo, CA
Don Juan Avila Middle School
Aliso Viejo, CA
Smoothie King
Aliso Viejo, CA
Westridge Community
Aliso Viejo, CA
Albany High School
Albany, CA
Kevin Lee
Yasin Steiert
Heryang Lee
Kevin Ko
Peter Amerkhanian
Nolan Tonkyn
Kai Wilmsen
Zachary Chiang
Nick Morrow
Andy Tu
Nir Maoz
Rita Phang
Julian Levine
CureDuchenne
Corona del Mar, CA
Pastime Hardware
El Cerrito, CA
St. Edward The
Confessor School
Dana Point, CA
Pegasus
Huntington Beach, CA
Harbor View Community
Newport Beach, CA
St. John's Episcopal School
Rancho Santa Margarita, CA
Phillips Family for Free Wheelchairs
San Clemente, CA
Jserra High School
San Juan Capistrano, CA
St. Margaret's
San Juan Capistrano, CA
Harbour Surfboards
Seal Beach, CA
Kathleen McTeague Dartez Challenge for Jouberts Syndrome
MD
Presbyterian Center
for Children
Marshall, MI
Learning Express
Reno, NV
Lamar Advertising
PA
All Saints Academy - k-8 schools
Scranton, PA
University of Scranton - Education Dept
Scranton, PA
