Become a Champion

Become A Champion
LEFT SIDEBAR:

Our Champions

CGRF’s champions are people who have taken on the cause to find a cure for Gaucher Disease Type 2 and Type 3. They are families grieving the loss of a child. They are friends and loved ones affected by the disease. They are concerned companies and committed students. They help Children’s Gaucher Research Fund advance in its quest for a cure by

making their own personal donations
sponsoring the Lysosomal Diseases and the Brain Conference
hosting memorial golf tournaments and other charity events
asking their communities to make donations in lieu of gifts for birthdays and anniversaries
creating corporate programs for matching employee donations
organizing their own fundraising events
participating in Awake-A-Thons
Our champions have helped over 2 million dollars raised for medical research. Become a champion yourself by What could you do to help us find a cure?

CENTRAL AREA:

How to Help: Become a Champion

Read some of the inspiring stories about our champions to get ideas for how you can make a difference, too.

Wells Fargo Bank
Each branch of Wells Fargo is given an annual donation budget and each branch manager is allowed to choose a local charity each year that will receive the donation. The Granite Bay, California branch of Wells Fargo is the branch that is used by the Children’s Gaucher Research Fund. This branch has selected the CGRF as their charity of choice for the past five years. Since Wells Fargo and most other banks throughout the United States have a donation budget, this is an excellent opportunity for champions across the country who have a passion for raising funds for Gaucher research. Visit your local bank and inquire with the branch manager.
50th Anniversary Party
Ron and Ada Schirf of Latrobe, Pennsylvania have a granddaughter, Danielle, who has Gaucher disease. When the Schirfs hosted their 50-year anniversary party, all guests were asked to consider a donation to the Children’s Gaucher Research Fund in lieu of a gift. Ron and Ada sum up their thoughts as follows: “We wanted to celebrate this event with our family and friends, but at this point in our lives we don’t need any more stuff’. We decided to use this opportunity to channel the generosity of our friends and relatives to the cause we are most passionate about. We thought that this was a great way to enjoy our anniversary party with donations going to Gaucher research. Our idea was a tremendous success.”
Awake-A-Thon
The Florin High School KEY Club in Sacramento, California organizes an annual Awake-A-Thon where students come to the school gymnasium and participate in various activities throughout the night. KEY (Kiwanis Educating Youth) is a part of Kiwanis International, an organization striving to educate young men and women to volunteer spare time in their local communities. This organization develops and mentors youth as leaders, builds playgrounds, raises awareness or funds for pediatric research, and undertakes many more local projects. No problem is ever too big or too small for KEY Clubs! Through their 2008 Awake-A-Thon, Florin KEY Club raised $21,000 for the Children’s Gaucher Research Fund. Teacher and KEY Club advisor Elias Mendoza has this to say: “I enjoy seeing the positive attitude and vitality that this event brings out of these young adults. Their determination, aspirations, and hopes are contagious. Imagine what could be accomplished if every school had a similar student organization?”
Coldwell Banker Charity Golf Tournament
Coldwell Banker of Sacramento, California sponsors an annual charity golf tournament with the proceeds going to the Children’s Gaucher Research Fund. Golfers are charged a fee to cover golf, cart, dinner and give-a-ways. Revenue comes from local companies who sponsor each golf hole, as well as certain contests and raffles that occur throughout the day.
Gregory Austin Macres Charity Golf Tournament
The Gregory Austin Macres Charity Golf Tournament takes place in the Silicon Valley every year in September. Most participants either knew our son Gregory personally, had heard of his battle with Gaucher disease, or learned of his journey by attending the tournament in recent years. This golf tournament is a way to keep his memory alive, honor the battle he fought, and raise funds for research in an effort to find a cure. Golfers are charged a fee to cover golf, cart, dinner and give-a-ways. Revenue is derived from local companies who sponsor each golf hole, as well as certain contests and raffles that occur throughout the day.
Charity Concert
Maria Villar, a senior at Charlottesville High School in Charlottesville Virginia, organized a Charity Concert raising over $3,400 for medical research. Maria’s sister, Victoria has Gaucher Disease. Here is Maria’s description of the event:
“At the actual concert, after all of the set-up, the first thing that I did was welcome everyone who attended. Then the LifeTeen Band that I am a part of sang a few songs. After that, my piano teacher, Mateo Favero, played a few pieces on the piano. When he finished, we had an intermission for about fifteen minutes so that the audience could enjoy the refreshments we had provided. After the intermission I talked a little bit about why I decided to hold the concert. I had to do a community service project for my Government class, so I decided that it would be a good idea to host a concert that would help fund research for my sister’s disease. It is something that has weighed down upon our family and my sister for years. I thought that anything that I could do to help would be great. During my speech my sister came up to the front and thanked everyone for attending. After that an archipelago group from the University of Virginia called CHoosE performed. Then the LifeTeen Band and CHoosE sang a few songs together, and when they finished my Father gave a speech about his experiences with my sister having Gauchers. We raised over $3,400 at the concert.”
Switch Stores and Help CGRF Earn Money!

Through the help of a Gaucher Family, Suzy Ashley in Florida, The
Children’s Gaucher Research Fund has signed up to make money with an
online health and wellness company. We are currently raising
approximately $6,000 a year and have earned over $40,000 since the start
of the program. We have done this by simply changing where we shop!
With this fundraising opportunity, families can shop for better, less
expensive and safer products for their households such as: toothpaste,
laundry detergent, soap, shampoo, vitamins, and 400 other great
products. Not only do families benefit from these products created for
environmental wellness, but it will be no new money for you AND CGRF
will receive 7% back from every order you place! This means that each
month, CGRF receives a check simply from people shopping for their
everyday consumable products.

Please help us continue to make this program a success. For information
about how you can help your family and earn money for CGRF please visit
http://www.livetotalwellness.com/suzy or contact Suzy Talluto-Ashley
directly at sashley2@cfl.rr.com.
Jazz in the Garden Fundraiser
Country Moms and Kids is an organization that serves moms in the Northern California communities of Roseville, Rocklin and Granite Bay. Country Moms and Kids provide support, education and friendship, along with opportunities to become involved in the community. They became aware of our efforts and offered to join hands in our search for a cure. On a beautiful Saturday afternoon, a “Jazz In The Garden Fundraiser” was organized to benefit the Children’s Gaucher Research Fund. The event provided food and entertainment in the beautiful California sunshine. Food was donated, a live Jazz Band performed pro-bono, and each attendee paid a small fee for admission.
Pizza Hut Fundraiser
Michele, Russell, Erin and Kelly Marsh — in collaboration with Pizza Hut of Maryland — sponsored a fundraiser for the Children’s Gaucher Research Fund. Pizza Hut kindly donated 20% of all sales from the Perry Hall, Maryland restaurant that evening to CGRF. The event was a way to honor the Marshes’ daughter, Lauren, whom they lost to Gaucher Disease. The event that evening raised over $420. The Marshes would like to thank Pizza Hut of Maryland, St. Joseph (Fullerton) School families and others for a successful evening! Michele and Russell Marsh lost their daughter Lauren to Gaucher Disease on March 28, 1992. Despite their loss, the Marshes continue to fight the battle to find a cure.
A One Man Bike Ride
John Carman, manager of the Coldwell Banker real estate office in Palo Alto, California, chose to golf at the Gregory Austin Macres Memorial Golf Tournament. He then made another choice — to ride his bike 50 miles from his office to Cinnabar Hills Golf Club prior to tee-off. He asked around for a few individual sponsors, and things took off from there! John simply had an idea, acted upon it, and raised over $7,500. His simple idea showed us: anything is possible if enough people care.
Dairy Queen Fundraiser
With the initiative of Robbie and Suzy Ashley of Merritt Island, Florida, the first annual Dairy Queen fundraiser was organized. Cal and Stacy Dixon, former NFL football player and longtime friend of Suzy Ashley, hosted the event. Cal opened the doors to his Dairy Queen one Saturday and donated a portion of all profits to the Children’s Gaucher Research Fund. The event raised over $1,200. Also included in the fundraising was a car wash sponsored by the Holy Trinity Football players who graciously gave all their earnings to the Children’s Gaucher Research Fund.
E & O Trading Company Restaurant
Located in downtown San Jose, California, E&O Trading Company celebrated its One Year Anniversary by sponsoring a charity fundraiser for the Children’s Gaucher Research Fund. On a beautiful summer evening, over 250 guests were treated to a dinner buffet featuring tastes from the critically acclaimed E & O Southeast Asian menu. In addition, the E & O Trading Company featured fine wines, champagne, micro-brewed beer, flavored martinis, and the Cecil Wells – Kai Hutchins Jazz Band. All were in agreement — that every aspect of this event was first class. Through a small admission fee, as well as raffles and an auction, the event successfully raised $10,500.
Employed by the E & O family, Daniel Torres shared his family’s experience with Gaucher Disease. Flanked by his wife Maria and his Daughter Alexandria, Daniel paid tribute to his 14 year old daughter, Alexandria. There was not a dry eye in the house.
In Daniel’s words: “As some of you already know, the Children’s Gaucher Research Fund is a cause that is as close to my heart as humanly possible. For those of you who do not know, I would like to introduce you to my hero, my inspiration, Alexandria Torres, my daughter. To this date, Alexandria is still the world’s only surviving mismatched unrelated Bone Marrow Transplant patient cured of Gaucher Disease. For some families, bone marrow transplantation can be a viable option. For others, genetic research represents the best chance of survival. In either case, there is still much more work to be done until we claim victory.”
What’s Your Idea?
What simple action could you take to make a difference in the lives of GD2/3 families? If you have a fundraising story to share, please contact us at research@childrensgaucher.org.
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RIGHT SIDEBAR:
CGRF’s Sharing Kit
One of the most powerful ways you can advance the cause to find a cure for Type 2 and Type 3 Gaucher Disease is to ask friends and family to join you in the effort. Here are resources to help you activate and empower your community.
Use or customize this letter inviting friends to join you in the cause to find a cure.
Post this graphic to your blog or facebook profile.