By admin on April 22, 2014

Madi, a donor conceived college student on the Donor Sibling Registry had a great idea for her school project.

This is what she wrote to me a few weeks ago: In our class we have been given the vague assignment of choosing a global problem (anything we want) and selecting a global brand (again, it can be any brand) and creating an idea to connect the two in order to help people. Being a DC person I immediately thought of the DSR and the struggle that donors and DC people go through in finding their families. My team and I thought that it would be an incredible idea to explore how an airline company could work to help the DSR and those who use it connect with their long-lost loved ones by getting people to donate miles or free flights to people traveling to see their biological family members. I reach out to you today because I would love to hear your thoughts on our idea and or anything you feel we should know about the DSR before beginning our brainstorming. I think the DSR is an incredible tool and as a DC person I am thankful it exists.

And here is the finished school project video that I received from her yesterday:

http://vimeo.com/92497809

What a fabulous idea, and so well done! I wish I knew a marketing expert, or someone who worked for an airline who could help us bring an idea like this to fruition.


By admin on April 06, 2014

I just received the following email today. If anyone is still questioning the importance of comprehensive medical and genetic testing of donors, and the urgency in regards to being able to update and share medical information amongst families…read on. When will the reproductive medicine industry get on board, and realize that deliberately keeping genetic relatives from each other can be harmful to families?

“I am the parent of two children who were born with a sperm donor.  They are both in their early 30’s.  In the past 6 weeks we have discovered that they were born with a bad gene and they have a rare heart disease.   With this gene,  a person just drops dead with no warning.   In checking my grandchildren, two of them, under the age of 10, carry the gene.  My oldest child and the youngest grandchild have had surgery.   My younger child is going to have a baby in December and that grandchild will have a 50 percent chance of getting the disease.  Still testing etc to see what that treatment will be.  I have had DNA testing done and I do not carry the gene.  Doctors said it had to come from the donor.

My question to you is what should we do to notify others about this issue.  We just can not sit back and not try to notify others.  I have been in contact with the doctor who did the procedure.  The donor was a medical student or an intern.  It was not like it is today.

To say the least, we are beside ourselves.  So much has happened and we are just trying to do what is needed and we all feel that we should reach out.

Thanking you in advance, for any advice you can give us.”

84% of our surveyed sperm donors said that they had never been contacted by their clinic/sperm bank for a medical update, while 23% of them said that they or a close family member had a medical/genetic issue that would be important to share with families.

96% of our surveyed egg donors said that they had never been contacted by their clinic for a medical update, while 31% of them said that they or a close family member had a medical/genetic issue that would be important to share with families.