Todays Mompreneur

Approximately 2 weeks ago I posted about my search for mompreneurs to interview. The first reply I received was from Kristy Colvin, a today.com blogger and an amazing woman. If you’ve ever read her blog, Mosaic Moments, then it’ll come as no surprise that she is also the president of the International Mosaic Down Syndrome Association. She’s an amazing wife, mother and grandmother.

If you haven’t heard of her previously, you might recognize her from other sources. Kristy has also shared her story in places such as the Yvonne Pierre Show, which is a Blog Talk Radio show, and on This American Life.

What inspired you to create International Mosaic Down Syndrome Association (IMDSA)?

20 yrs ago, my middle son Tim, was diagnosed with mosaic Down syndrome when he was 2 1/2 yrs old. There was zero information on this rare form of Down syndrome and because it is so rare, I had no way to talk with other families.

Raising a child with a rare birth defect with no support or information can be a very lonely ride. However, I made the best of it and decided to just take one day at a time. We raised our son like our other sons. (We have 5) We expected him to accomplish what he was capable of and put no limits on him what-so-ever. He turned out to be a fine young man because of it!

In 1999, the Internet was booming and with my new connection I decided to put mosaic Down syndrome in the search engine– not expecting to actually find anything. However, I was happily surprised to find that a new website was being made for some basic information on the subject. Bree Weasner and Linda Beets had both just had daughters with mosaic Down syndrome and came together to make a website and Yahoo e-group for parents of children with MDS to come together and talk.

Within a year, parents were popping out from all over the world on that tiny Yahoo group– each looking for information and the first thing each of these parents said was, “Finally, I am not alone!”

It was through this tiny egroup discussions that I realized the only way to find information for these families (and myself) was to make an organization dedicated to mosaic Down syndrome.

How many years has it been since the launch of this organization?

We are about to go into our 8th year.

What does IMDSA offer members/visitors?

IMDSA’s mission statement is to provide support, information and research to those touched by mosaic Down syndrome. We do this in a number of ways!

Support:

• We have a very active online support group. We still use the same Yahoo egroup, however it is no long that tiny little group from years ago. We have families representing every state and every country of the world!
• We have a program called Family Connect where families enter information into our online database and our Family Connect coordinator connects these families through email according to their geographical location, age of child, and any medical conditions that may be present.
• IMDSA has a toll free hotline that enables families and professionals to call in. I am the one they will get on the other end of the line and I am always happy to answer any questions and provide comfort and support to those new families who are afraid when they first receive this diagnosis.
• IMDSA also has a biennial Research & Awareness conference. Our first was in 2004 and this was a very historic event! Because mosaic Down syndrome is so rare, families rarely ever get to meet another family face to face. The families clung to one another that weekend and cried when they had to say good-bye. We are currently planning our 4th conference for 2009.

Information:

• Before IMDSA the only information available was a short sentence in a book that basically said “MDS is so rare that your child probably doesn’t have it”. We have changed since then! I have talked to hundreds of families throughout the world as well as medical professionals and researchers. With the information I have gained, I have been able to write most of the information that is available now on MDS.
• We provide information packets to our members and anyone who requests them. This includes fact sheets, a family brochure (we currently have our family brochure in English, Spanish and Portuguese) and just recently we developed a Professional Booklet that was written collaboratively by all the professionals on our advisory board.
• IMDSA provides a quarterly newsletter MOSAIC WORLD full of stories, information, tips and news. This newsletter has grown over the years and is currently about 18 pages long.
• IMDSA’s Research & Awareness Conference not only provides support for these families, but also information. We invite professionals to present information concerning mosaic Down syndrome and Down syndrome. This coming year, we have over 30 speakers planned to conduct workshops in our main conference. We also provide a Youth Conference and Kid Konference so the whole family has fun!

Research:

• Without research, there is no information. We work closely with several researchers interested in mosaic Down syndrome.
• We currently are in search for 2 Master’s students to award a scholarship to, so they can conduct research on MDS for their thesis.
• We are in the early stages right now, but have developed a “Research Connect” program where we have made a database and will use this to connect families and researchers according to interests.
• Again, our Research & Awareness Conference is unique! We invite researchers to attend our conference and conduct research for mosaic Down syndrome and Down syndrome on site at the conference. This enables us to gain more information and enables families to participate and researchers to have more participants.

How much time per day would you say is dedicated to IMDSA?

LOL Far too much! Depending on what is going on sometimes it is 8 hours, but more times it can be 16 hours a day!

How long did it take for you to launch IMDSA? What trials and errors have you faced?

In 2001 we began the structure of the organization and were just about to submit our papers for nonprofit status in the third week of September. Unfortunately, with the shock and devastation of 9/11 we decided to wait to send our papers in. We did finally send them in and we received our nonprofit status early in 2002.

IMDSA is an ever changing organization. We learn as we go. I would say that the most difficult time we have is getting volunteers. Our organization is all volunteer run and sometimes it is difficult to find volunteers because most are parents and are trying to juggle their home lives as well. As time has progressed, we have learned to look outside the box and now our Research Officer is a Genetic Counseling Student who is interning with us, and our National Vice President is a researcher. This is working very well for us, as well as the great parents we currently have on our board.

Do you have any special tricks that have been especially helpful while holding the position of president and managing time for your family?

This is a very difficult thing to do. Especially since we are still an all volunteer organization. I try to shut things down once my youngest son is home from school, and I make sure to not be on the computer by the evening when my husband is home. I clean house while I am on the phone with parents or other businesses.

Sometimes I type in my sleep!

Have you been able to find middle ground in both areas to keep things running smoothly?

Everything runs smoothly without a doubt, but I am a multi-tasker and that is probably why. My youngest son is 12, so I don’t have a lot of things I have to do like I did when they were all younger. And, the 2 who live with me (Tim(22) and Garrett(12)) help me out a lot around the house.

You have IMDSA, your today.com blogs, and your family… Is there anything else you’d like to add to your plate as a busy mompreneur?

I am ALWAYS adding something! I just began looking for work as a content writer and finally got my website finished yesterday! http://kristycolvin.webs.com/

I am hoping to get some paid work with this to add to our family’s income. I have already done one job and am pursuing some more.

IMDSA is ALWAYS expanding! We are always working on new things because new things are always happening. March 21st is World Down Syndrome Day and 2 years ago I developed a program to help our families spread awareness about mosaic Down syndrome and raise money for our organization. Genes Day is a fun event where families go out to their communities through work, school and general businesses and get individuals to “pay” to wear their jeans on Genes Day. I am working now on finishing this up so all the Down syndrome Associations can be involved and raise money for their organizations as well.

Other things…… I just recently received my first publication in a book. Windows Into Heaven (you can get this off our site) is a “chicken soup for the soul” kind of book where families of children with DS and MDS wrote stories about their kids. Out of the thousands of entries received, mine was chosen as one of the 29 stories in the book.

Also, last year IMDSA made a book called Recipes for Research. This is a recipe book with 200 recipes from our members throughout the world, plus information on mosaic Down syndrome (all writen by me) and 20 personal pages from families. We have just relaunched the sale of these and I have 100+ books in my house that I would love to sale!

Additional things….. I am in the process of writing a book with a friend of mine who is also in the public eye a lot. This is a slow process because she has to travel abroad a lot, and I am conference planning, but eventually we will have that done.

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