My sister’s best friend works for a non-profit organization that helps educate and provide services to families that have been affected by Cornelia de Lange Syndrome (CdLS).
Deirdre was telling me how hard her organization has been working to try and get money for more research and to help support families and patients (1 in10,000 live births) that have or think they have the syndrome.
- The Foundation was founded in 1981 by parents of children with CdLS and interested medical professionals.
- The Foundation is a family support organization that works to ensure early and accurate diagnosis of CdLS; promote research into the causes and manifestations of the syndrome; and help people with a diagnosis of CdLS make informed decisions throughout their lives.
- Currently, the Foundation serves more than 2,400 people with CdLS; 10,000 family members/caregivers; and 2,500 clinical professionals.
Please help! Have a Tag Sale June 5th (or anytime this summer) to support this nonprofit organization
Do you have odds and ends that “don’t have a home” in your house, because they are extras, or no longer needed? Have your children outgrown their toys, do you have furniture that is not being used? Summer time is a great time to unload and get rid of things you no longer need by having a tag sale.
If you can afford to, why not consider donating your Tag Sale earnings (or a portion of them) to a worthy charity?
From the CdLS website, “This year, you can “Tag the Day” for CdLS by organizing your own yard sale to benefit people with CdLS. The Foundation’s goal is to have at least one yard sale in every state.
Get your neighbors, friends and relatives to donate items to your sale, or volunteer to organize a neighborhood sale, with proceeds benefiting the Foundation. While the official event is June 5, you can host your tag sale any time during the summer.
Request your Yard Sale Across America kit and start planning to rid yourself of clutter and raise funds for the CdLS Foundation. Join others by putting your yard sale on our interactive map. Contact events@CdLSusa.org or call Gail Speers at 800-753-2357.”
If you have never had a tag sale before, but are curious about how to do it, you can see this video on YouTube for a great introduction on How to Have a Yard Sale.
If you sign up early enough, your tag sale can be listed on an interactive map and the money will go to help educate and support families who suffer from this genetic disorder.
Pepsi Challenge and Funding for CdLS
Yesterday I had the chance to interview Marie Concklin-Malloy about her experience working for the CdLS Foundation. She told me there is another campaign for fund raising that is going on right now, and they really are desperate for help. This contest ends on May 31st, 2010.
The Pepsi Co. is giving away $1.3 at the end of the month to various charities. There are several different categories non-profits are competing for, with CdLSs currently competing in the $50,000 category. If it comes in the top 10 through voter choice, it will receive this grant. The Foundation was at 106, but then fell to being ranked 135. It is really hard for them to compete against charities such as Autism because the occurence for this rare disorder is 1 in 10,000.
Marie told me the CdLS Foundation could do so much with just $50,000, and 90 cents on every dollar that is donated goes to helping the patients and their families. But it would really help if people vote every day. For the next five days, please make a commitment to vote for them and pass this on to as many folks as you can.
Finally, even if they don’t win, Marie said, “The comments that have been left have been so warm and worth it. Because of the economy, we haven’t been able to fund research since 2008. We have a lot of researchers on our clinical advisory board, and with just a few thousand dollars we could launch research about hearing problems, for instance, that could really help a lot of people.”
Please click this link, http://www.cdlsusa.org/ and at the bottom left click on the vote button telling Pepsi you want this cause to receive the $50K to fund additional research. If you can help pass the word for the next week until the contest is over it would really help. Thank you!
Assistant Executive Director, Interview, Marie Concklin-Malloy