Opening Your Heart to Hope on St. Valentine’s Day

A Valentine’s Day Message from David Sobsey

Valentine’s day is a time of hopes and dreams, and I am hoping that you will help me share some hope with families that need it.

First, I want to say that I am getting A LOT of HELP to write this, and you might legitimately ask whether it is coming from me or my helpers. Well, it is a little bit of both. (As they say in the political ads, “My Name is David Sobsey… and I authorized this message.”)

Second, I want to be honest and tell you that I am trying to get you to donate some money to Project 401, but I also want you to know that I don’t really care how much you donate. Of course, I wouldn’t try to stop you from donating hundreds or thousands, if you really wanted to do it, but honestly the amount doesn’t really matter to me because what I really want to give to these families is hope. I think it will help them to have hope if they know that a lot of people care and make make small donations of even a few dollars.

I also want to tell you that I am not going to know whether you donated anything or not, so don’t feel pressured to give. That isn’t the point.  If you live in the US and want a tax receipt, you can get one. If you want to leave a comment on my donations page you can, but the money all goes into one pot, and no one keeps track of who got the most donations, so really just do what your heart tells you to do.

Well, now that I’ve given a bunch of  reasons why  you can ignore this request if you want…. Maybe I should try to give you some reasons to consider it, and tell why I am supporting this cause.

As most of you know, I have a condition known as MECP2 Duplication Syndrome. It has been a tough life at times. I have been sick with pneumonia dozens of times. I have seizures every day. The list of challenges could go on and on, but that isn’t the point. I now know that I am one of the lucky ones. At 21, I am one of the older survivors, and I already have had and continue to have a good life. There are lots of others with MECP2 Duplication Syndrome who have had a tougher time than I have. I’ve met some of them, and heard about a bunch of others. I guess things have been just rough enough for me that I can imagine how hard life has been for them and their families.  I want to help, and  I hope that maybe you would like to help, too.

There are families fighting day after day for their children’s lives. Some families have lost one child already, and they are fighting to keep the next one. They will keep fighting, but they need some hope to keep them going. Project 401 offers them some hope through research.

Will this research lead to a cure? My dad says that is a long way from this early research to finding a cure; But I say, the longest journey starts with the first step, and who knows, it may not be as long a journey as we think. Long or short, that first step offers some hope to families.

Families of children and adults with MECP2 Duplication Syndrome have joined together in Project 401 to raise money through the Rett Syndrome Research Trust to study MECP2 Duplication Syndrome and possibly point the way toward a treatment. They are determined to raise $80,000 by April 1, 2012. Please consider opening your heart to join with them in honor of valentine’s day. There are several ways that you can donate.

project 401 logoYou can use paypal to donate through Project 401 using my personal page at, or you can donate through the Project 401 Main Page.

To Donate via Check or Mastercard, you can donate through the Rett Syndrome Research Trust.

If you can’t make a donation but wish to leave a message of support, you can do so on my Project 401 Page.

Please consider sharing the page with anyone else who might help!



One response to “Opening Your Heart to Hope on St. Valentine’s Day

  1. Well said. $80,000 is not $8,000,000 it is certainly achievable, and the smallest amount from many will make it happen. As a family affected by MECP2 Duplication Syndrome, I know as much as anyone else that we need HOPE, we need to MAKE A DIFFERENCE and the reason is that our children cannot do it for themselves. Scientists believe it is possible to reverse this syndrome, they have HOPE and KNOWLEDGE, now we just need funding.
    Please support Thankyou

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