CDH Research Bill
Recently we found out that our little girl will be born with a serious and life threatening birth defect called Congenital Diaphragmatic Hernia. Lisa has set a goal to have 1000 letters sent to Capitol Hill before Baby Maddie is born this July. CDH has no known cause, prevention or magic pill. Our hope is that the CDH Research Bill would change that and save at least one CDH baby from going through the struggles that lie ahead for Maddie Spence.UPDATE (4/25/2011): You can now submit a Letter for Maddie through Facebook. Follow the link below (requires facebook login) http://apps.facebook.com/causes/petitions/641
Step 1: Look up your Representative or Senator's information here: Write Your Representative
Step 2: Print out and mail this letter to your representative: 1000 Letters for Maddie
Step 3: Contact a Yates or a Spence and let them know your letter has been mailed so that your name can be added to the list: CDH Letters Sent
Step 4: Print out an extra copy for friends, family, neighbors, co-workers or just repost this web site to your facebook account.
A little about 1000 Letters for Maddie
There is a movement in Congress urging our representatives to sponsor a bill that would provide funds for further research of CDH. This bill would:
- Provide funds for statistical studies using databases and information already on record. Without additional funds, the people who study these things cannot feed their families. Already CDH families and medical providers have little to no empirical data about commonalities of causes, advances in treatment options and long-term health of survivors.
- Provide funds to research possible genetic causes of CDH
- Provide funds to advance prenatal, postnatal and long term treatment options.
- Allow provisions for the Secretary of Health and Human Services to increase public awareness of CDH, especially to encourage mothers to seek and receive good prenatal car
Read more here: Congenital Diaphragmatic Hernia Research Bill
Please message or email me if you have any problems downloading Maddie's letter. I will email you a copy of it.
