Guest guest Posted March 20, 2008 Report Share Posted March 20, 2008 Hi Everyone Tomorrow, March 21st, is Genes Day for all of those at IMDSA! Throughout this week, we have had the awesome opportunity to be inspired in an amazing way by hearing all the stories from so many parents saying what it means to them and their family to have a child with MDS. I am amazed at the outpouring support that has been given just from the one question that asked, " What do we do now? " We have all been there, regardless if our child was diagnosed prenatally, at birth, or years down the road. We have all asked, " What do we do now? " And, this is why we designed Genes Day for you! So that you can go out and tell your co-workers, your teachers, and your community what you are doing now. This gives you the opportunity to say, " Yes. My child has MDS. But, that is not the end of the story. " This gives you the chance to advocate for your child. Pave the way for your child's future within your community. Let everyone know that your child is wonderful and without him or her your life would not be complete! I am challenging each of you to tell someone about MDS tomorrow that you have never told before or someone who only knows your child has MDS, but they don't know the whole story. The more you tell, the less doubt is out there! I hope you all have a wonderful Genes Day! Kristy Colvin IMDSA President ____________________________________________________ International Mosaic Down Syndrome Association PH: 1- Toll Free: 1-888-MDS-LINK www.imdsa.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2008 Report Share Posted March 21, 2008 Hi We had our Genes Day yesterday. I have some photos i will add to the site of the kids with their shirts on out the front of school at the end of the day. (mind you it was so hot, wasn't terribly impressed about standing for them lol) Since we have a very strict uniform policy, it was so easy to spot them walking from their classrooms at 3pm!! lol The white stood out like anything. The girls said they had been asked questions all day about the shirts, and so that everything i explained to them, they successfully relayed to teachers and students. Have fun Cheers Kristy Colvin wrote: Hi Everyone Tomorrow, March 21st, is Genes Day for all of those at IMDSA! Throughout this week, we have had the awesome opportunity to be inspired in an amazing way by hearing all the stories from so many parents saying what it means to them and their family to have a child with MDS. I am amazed at the outpouring support that has been given just from the one question that asked, " What do we do now? " We have all been there, regardless if our child was diagnosed prenatally, at birth, or years down the road. We have all asked, " What do we do now? " And, this is why we designed Genes Day for you! So that you can go out and tell your co-workers, your teachers, and your community what you are doing now. This gives you the opportunity to say, " Yes. My child has MDS. But, that is not the end of the story. " This gives you the chance to advocate for your child. Pave the way for your child's future within your community. Let everyone know that your child is wonderful and without him or her your life would not be complete! I am challenging each of you to tell someone about MDS tomorrow that you have never told before or someone who only knows your child has MDS, but they don't know the whole story. The more you tell, the less doubt is out there! I hope you all have a wonderful Genes Day! Kristy Colvin IMDSA President ____________________________________________________ International Mosaic Down Syndrome Association PH: 1- Toll Free: 1-888-MDS-LINK www.imdsa.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2008 Report Share Posted March 21, 2008 That is great ! I can't wait to see the pictures! Kristy Twomey wrote: Hi We had our Genes Day yesterday. I have some photos i will add to the site of the kids with their shirts on out the front of school at the end of the day. (mind you it was so hot, wasn't terribly impressed about standing for them lol) Since we have a very strict uniform policy, it was so easy to spot them walking from their classrooms at 3pm!! lol The white stood out like anything. The girls said they had been asked questions all day about the shirts, and so that everything i explained to them, they successfully relayed to teachers and students. Have fun Cheers Kristy Colvin wrote: Hi Everyone Tomorrow, March 21st, is Genes Day for all of those at IMDSA! Throughout this week, we have had the awesome opportunity to be inspired in an amazing way by hearing all the stories from so many parents saying what it means to them and their family to have a child with MDS. I am amazed at the outpouring support that has been given just from the one question that asked, " What do we do now? " We have all been there, regardless if our child was diagnosed prenatally, at birth, or years down the road. We have all asked, " What do we do now? " And, this is why we designed Genes Day for you! So that you can go out and tell your co-workers, your teachers, and your community what you are doing now. This gives you the opportunity to say, " Yes. My child has MDS. But, that is not the end of the story. " This gives you the chance to advocate for your child. Pave the way for your child's future within your community. Let everyone know that your child is wonderful and without him or her your life would not be complete! I am challenging each of you to tell someone about MDS tomorrow that you have never told before or someone who only knows your child has MDS, but they don't know the whole story. The more you tell, the less doubt is out there! I hope you all have a wonderful Genes Day! Kristy Colvin IMDSA President ____________________________________________________ International Mosaic Down Syndrome Association PH: 1- Toll Free: 1-888-MDS-LINK www.imdsa.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2008 Report Share Posted March 21, 2008 Hello all! I am working on an email to send out to Cincinnati Children's Hospital on Genes Day (one final effort at awareness and fund raising in my workplace). I have been so impressed with all of these fantastic stories that have come though that I wanted to know if I could change the names and use one or two in my email. Please let me know if you would be OK with me using your story! I think it would be great for awareness! Sincerely, PS. If you have the text of your story nearby, and could paste it in your email to me, I would greatly appreciate it! Please send it to imdsaresearch@... On Thu, Mar 20, 2008 at 6:53 PM, Kristy Colvin wrote: > Hi Everyone > Tomorrow, March 21st, is Genes Day for all of those at IMDSA! > > Throughout this week, we have had the awesome opportunity to be inspired > in an amazing way by hearing all the stories from so many parents saying > what it means to them and their family to have a child with MDS. I am amazed > at the outpouring support that has been given just from the one question > that asked, " What do we do now? " We have all been there, regardless if our > child was diagnosed prenatally, at birth, or years down the road. We have > all asked, " What do we do now? " > > And, this is why we designed Genes Day for you! So that you can go out and > tell your co-workers, your teachers, and your community what you are doing > now. This gives you the opportunity to say, " Yes. My child has MDS. But, > that is not the end of the story. " This gives you the chance to advocate for > your child. Pave the way for your child's future within your community. Let > everyone know that your child is wonderful and without him or her your life > would not be complete! > > I am challenging each of you to tell someone about MDS tomorrow that you > have never told before or someone who only knows your child has MDS, but > they don't know the whole story. The more you tell, the less doubt is out > there! > > I hope you all have a wonderful Genes Day! > > > Kristy Colvin > IMDSA President > ____________________________________________________ > International Mosaic Down Syndrome Association > PH: 1- > Toll Free: 1-888-MDS-LINK > www.imdsa.com > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2008 Report Share Posted March 21, 2008 Hi Everyone We had our Genes Day at school today - no school tomorrow. The teachers had their jeans on - unusual for our school. Those who made the donations had their t-shirts on. I spent most of my break time explaining MDS to my co-workers. Today, a lot of people who never heard of MDS now know exactly what it is. Mission accomplished - I Feel Great!!! Donna - proud grandmother of Adam 5 mds (who today threw his arms around my neck and said " I love you gama " ) My day is perfect Kristy Colvin wrote: Hi Everyone Tomorrow, March 21st, is Genes Day for all of those at IMDSA! Throughout this week, we have had the awesome opportunity to be inspired in an amazing way by hearing all the stories from so many parents saying what it means to them and their family to have a child with MDS. I am amazed at the outpouring support that has been given just from the one question that asked, " What do we do now? " We have all been there, regardless if our child was diagnosed prenatally, at birth, or years down the road. We have all asked, " What do we do now? " And, this is why we designed Genes Day for you! So that you can go out and tell your co-workers, your teachers, and your community what you are doing now. This gives you the opportunity to say, " Yes. My child has MDS. But, that is not the end of the story. " This gives you the chance to advocate for your child. Pave the way for your child's future within your community. Let everyone know that your child is wonderful and without him or her your life would not be complete! I am challenging each of you to tell someone about MDS tomorrow that you have never told before or someone who only knows your child has MDS, but they don't know the whole story. The more you tell, the less doubt is out there! I hope you all have a wonderful Genes Day! Kristy Colvin IMDSA President ____________________________________________________ International Mosaic Down Syndrome Association PH: 1- Toll Free: 1-888-MDS-LINK www.imdsa.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2008 Report Share Posted March 21, 2008 Donna As I was ready to hit reply and congratulate you on your wonderful Genes Day and how great it is that you were able to teach your fellow teachers about MDS I read your ps.... This is the hundredth time I have cried tears of joy today! I am speechless! LOL (you know that takes a lot for me!) The sweetest words you ever can hear from a child is " I love you " and when that child is struggling to find words to communicate their feelings, when they actually say them it is a million times sweeter! Congratulations! What a perfect first Spring day! Kristy Donna Spudic wrote: Hi Everyone We had our Genes Day at school today - no school tomorrow. The teachers had their jeans on - unusual for our school. Those who made the donations had their t-shirts on. I spent most of my break time explaining MDS to my co-workers. Today, a lot of people who never heard of MDS now know exactly what it is. Mission accomplished - I Feel Great!!! Donna - proud grandmother of Adam 5 mds (who today threw his arms around my neck and said " I love you gama " ) My day is perfect Kristy Colvin wrote: Hi Everyone Tomorrow, March 21st, is Genes Day for all of those at IMDSA! Throughout this week, we have had the awesome opportunity to be inspired in an amazing way by hearing all the stories from so many parents saying what it means to them and their family to have a child with MDS. I am amazed at the outpouring support that has been given just from the one question that asked, " What do we do now? " We have all been there, regardless if our child was diagnosed prenatally, at birth, or years down the road. We have all asked, " What do we do now? " And, this is why we designed Genes Day for you! So that you can go out and tell your co-workers, your teachers, and your community what you are doing now. This gives you the opportunity to say, " Yes. My child has MDS. But, that is not the end of the story. " This gives you the chance to advocate for your child. Pave the way for your child's future within your community. Let everyone know that your child is wonderful and without him or her your life would not be complete! I am challenging each of you to tell someone about MDS tomorrow that you have never told before or someone who only knows your child has MDS, but they don't know the whole story. The more you tell, the less doubt is out there! I hope you all have a wonderful Genes Day! Kristy Colvin IMDSA President ____________________________________________________ International Mosaic Down Syndrome Association PH: 1- Toll Free: 1-888-MDS-LINK www.imdsa.com Quote Link to comment Share on other sites More sharing options...
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