Sunday, October 24, 2010

Massachusetts Down Syndrome Congress

This weekend, I had the privilege of wearing the Buddy Walk shirt from the Massachusetts Down Syndrome Congress.  I first would like to that my friend Suzette who sent me my shirt.  Thanks Suzette!!  This is my son Jesse in the photo with me.
This is the second blog in my 50 Shirts from 50 States campaign and already I am realizing some things that I didn’t know before.  I already knew that there were so many great people involved in each organization.  I already knew that the Down syndrome community was a close knit family.  What I didn’t know is that each organization, while based in a city or state, has the ability to touch people and families all around the globe.  While the base or core resources are designed for a particular region, there is information that everyone can find beneficial.  I hope that as you continue to read each week, bookmark the organization that you find particularly interesting to you.  Please share the information with friends, family and colleagues as we continue to drive Down syndrome awareness nationally.  I also have come to realize that although there are in fact 50 states (this fact I did know) there are so many walks and organizations that I expect someday we will go well beyond 50 shirts.  That is a good thing.  I will strive to receive a shirt from all 50 states; I will also blog about all organizations that send me a shirt.  This week I received shirts from Colorado, Ohio, Pennsylvania, Wisconsin and Indiana.  How exciting and your week is coming soon.
In 1983, a group of parents were sitting in a living room chatting about their children with Down syndrome.  They wanted to know how they could connect and educate families, schools and communities, they did just that.  Today, with over 1600 members, The Massachusetts Down Syndrome Congress (MDSC) is recognized in Massachusetts and beyond as a preeminent organization for information, networking and advocacy for and about Down syndrome.  While there is no way I can write about all the great things that MDSC are doing, I will mention a few and strongly suggest that you visit their website to read about all their services and programs. 
In addition to the Buddy walk which took place on October 10th, MDSC is holding its 7th annual Educators Forum on November 18th at the College of Holy Cross.  This year’s topic Innovative Teaching Strategies; Building Bridges to Inclusive Education for Students with Down syndrome is designed for educators across Massachusetts  to learn about best practices for educating students with Down syndrome in an inclusive classroom.  This year’s keynote speaker will be Michael F. Giangreco, Ph.D., Professor at the University of Vermont in the Department of education and at the Center on Disability and Community Inclusion. 
On November 21st, MDSC All Stars will face off against the Boston Bruins Alumni team.  This is a benefit hockey game to raise awareness and funds for the MDSC.  If you are in the area, Please come out and support this great event, meet some great Bruin players, get some autographs and watch a charity hockey game.  In addition to the game, there will be a silent auction and raffle with fantastic items to win and bid on such as tickets to Red Sox games, Bruins games and autographed sports memorabilia.  If you cannot attend, you can sponsor a player or just make a donation on line at  This event, with $5 admission and free tickets to kids under 12, this is a great family outing. 
The MDSC Legislative Task Force is a group that has been working hard to pass MDSC’s priority bill H.1780, An Act to Require National Background Checks for Staff Who Work with Individuals served by the Department of Developmental Services.
Also, Advocates in Motion (AIM) seeks to provide fun, inclusive, interactive events each month for young people with Down syndrome.  Now is time to sign up for the 2010 – 2011 AIM.
MDSC is an official charity program of the Boston Marathon.  They are currently seeking both unqualified and qualified runners to participate in the 115th Boston Marathon on Monday, April 18, 2011. 
In addition to the programs listed, MDSC has a wide range of programs and services form new parent support, promoting inclusion, educating the public and educators to addressing social policy issues with state and local officials. 
This is an organization that is well run and highly organized under the leadership of Maureen Gallagher, Executive Director, and The Board of Directors along with a dedicated staff and hardworking members.  Please visit MDSC at or (800) 664-MDSC.  Please read about the programs and services and use their services or refer them to those who may benefit from what they have to offer.  Also check out the MDSC update, their summer newsletter and sign up to receive the monthly e-newsletter.
I would also like to introduce you to Brian Skotko, MD, MPP.  I realize that many (most) of you may already know Dr. Brian Skotko.  When my twins, Shane and Wyatt, were born and a local newspaper, Times News, was writing an article on Down syndrome they turned to Dr. Skotko.  Thank you!  Dr Brian Skotko is Chair of the Board of Directors to MDSC and a clinical fellow in genetics at Children’s Hospital Boston, Massachusetts General Hospital and Brigham and Women’s Hospital, specialist in the Down Syndrome Program at Children’s Hospital Boston and brother of a person with Down syndrome.  In addition to MDSC, Dr Skotko also services on the Board of Directors for National Down Syndrome Society, Band of Angels Foundation and Lettercase and also serves on the Professional Advisory Council to the National Down Syndrome Congress.  Please visit Dr. Brian Skotko at to learn more about him, books he has written, workshops, Testimony before congress and TV appearances. 

The next shirt I wear is from the Lehigh Valley Buddy Walk and the Eastern PA Down Syndrome Center.

Please feel free to contact me at

Monday, October 18, 2010

Kansas - Down Syndrome Guild of Greater Kansas City

This weekend I had the privilege of wearing a Step Up for Down syndrome shirt form this year’s walk in Kansas City which was sponsored by The Down Syndrome Guild of Greater Kansas City (DSG).  I would like to start by saying “Thank You” to everyone from Kansas City who wanted to make sure that a shirt was sent my way.  I want to especially say thanks to Amy Allison, Executive Director, of DSG who not only sent the shirt but also sent me information about the DSG.  It is clear to me the folks there know exactly what they are doing and are doing it well. 
Now, I would like to introduce you to this fantastic organization and tell you a little about what they do.  The DSG of Greater Kansas City, a nonprofit 501c3 organization, provides programs and services to improve the quality of life for individuals and families.  DSG currently serves over 1100 families and partners with 45 school districts and 22 hospitals to provide current and accurate information regarding best practices in supporting individuals with Down syndrome.
DSG offers resources including the DSG Center, website, resource library, Connections Newsletter, expectant parent supports, New Parent Magazine and Sharing the News Brochure.
DSG also offers education programs and services, including an annual educational conference, conference scholarships, seminars and workshops, Smart Start Program, inclusion solutions along with Down Syndrome Specialists.
DSG offers outreach programs like parent to parent network, support breakfasts, Hospital meal voucher program, peer presentations, changing lives presentations, birthday club program and community groups.
Some of the Social Opportunities offered by DSG include All Guild events, infant/preschool group, elementary age group, STARS teen program, adult group and of course, The Step Up for Down Syndrome Walk which is one of the largest in the country with over 7,000 participants.  WOW!!
I think they have thought of everything.  I am so impressed with what DSG is doing to help families and to promote awareness.  Thank you Amy for introducing me to this great organization and to everyone who is involved with DSG for all that you do.  I personally want to come and visit you and see firsthand your center and to meet the people of Kansas City. 
Please visit the Down Syndrome Guild of Greater Kansas City at or (913) 384-4848.  There is something there for everyone no matter where you live.  Also consider helping them by volunteering or sending a donation.  I know they would appreciate it.
Also visit First Downs for Down Syndrome (FDFDS).  FDFDS partners with the Kansas City Chiefs offensive line to promote greater awareness of individuals with Down syndrome.  FDFDS provides significant financial support to the Down Syndrome Guild of Great Kansas City and to the Down syndrome clinic at Children’s Mercy Hospital and other Down syndrome organizations.  Please visit First Down for Down syndrome at or (913) 722-2499.  This has turned me into a Chiefs Fan, after the NY Giants.
The next shirt that I will wear was sent to me from the Massachusetts Down Syndrome Congress Buddy Walk. 

Please feel free to contact me at

Sunday, October 17, 2010

50 States

A few weeks ago I posted on FaceBook that I would like to have a Buddy Walk shirt from all 50 states.  At the time I didn’t give it much thought except for the fact that I just completed my first Buddy Walk in Allentown, PA.  The Lehigh Valley Buddy Walk was sponsored by The Eastern PA Down Syndrome Center and I found myself wanting to wear my new Buddy Walk tee shirt every day.  I also found that when I wore the shirt people would ask me about the walk and this allowed me to not only mention my twin boys, Shane and Wyatt, who both have Down syndrome but more importantly allowed me to talk about Down syndrome awareness.  I find this to be very exciting.  Since then, a number of people have contacted me and the shirts started arriving.
So now what do I do?  Well, I will proudly wear each shirt as often as possible.   I will also write and tell you a little about the organization or the family that sent me the shirt.  All that I ask in return is that, hopefully, you read the blog and visit the sites of the organizations that I write about to learn more about them.  If you can assist them in anyway, please do so.  More importantly, if you or anyone you know can benefit from them, please contact them and use their services. 
I would also like to stress the fact I am not a professional writer (that may be obvious by my writing) but a dad of 3 kids, including twin boys with Down syndrome.  My goal is to say thanks to those who have helped me or prayed for our family and to spread awareness for Down syndrome related issues.  I also want to help as many other families who are seeking help and don’t know where to go.  If you are reading this and have never spent time in a Children’s Hospital or don’t have experience with special needs kids, please take a moment and learn more about it.  I never knew what families had to go through until my twins were born and my life will never be the same.  This IS a good thing. 

Friday, October 8, 2010

Shane and Wyatt's first Buddy Walk

We enjoyed a great day at the Lehigh Valley Buddy Walk.  This was our first of many walks and it was great meeting so many families.  Thanks to the Times News, Karin Cimms and Bob Ford for covering this event. 

Saturday, October 2, 2010

The Waksmunski Family: Here we go!!

The Waksmunski Family: Here we go!!: "Good Afternoon, Well, we have finally entered the world of blogging. I am not sure what this will look like but I am excited to share my th..."