Did you know? Down Syndrome fact

Did you know?

Life expectancy for people with Down syndrome has increased dramatically in recent decades - from 25 in 1983 to 60 today.



Be gentle.

Did you know? Down Syndrome fact

Sometimes a little info is easier to understand than to try and understand a huge concept.

So, did you know............

Fact

Down syndrome is the most commonly occurring chromosomal condition. One in every 691 babies in the United States is born with Down syndrome.

Be gentle.

Have you heard of the Congressional Down Syndrome Caucus?

What is the Congressional Down Syndrome Caucus?  What do they do?  What do they support?  Who supports them?  When I was reading an article about Alzheimer's and Down Syndrome, I came across this organization and decided to find out more.

In early May 2008, Representative Cathy McMorris Rodgers (WA-05) established the Congressional Down Syndrome Caucus, along with co-chairs Representative Pete Sessions (TX-32), former Representative Patrick Kennedy, andRepresentative Eleanor Holmes Norton (DC) to educate members of Congress and their staff about Down syndrome.

To date, the Congressional Down Syndrome Caucus has more than 40 members. Also, soon after Representative Patrick Kennedy retired, the Caucus welcomed a new co-chair, Representative Chris Van Hollen (MD-08). The Global Down Syndrome Foundation is deeply grateful to our past and present co-chairs and members for making such a difference in the lives of people with Down syndrome, their families and communities.

Mission of the CDSC

The mission of the Congressional Down Syndrome Caucus is to educate members of Congress and their staff about Down syndrome. The Caucus will support legislative activities that would improve Down syndrome research, education and treatment and promote public policies that would enhance the quality of life for those with Down syndrome.

The Congressional Down Syndrome Caucus will:

• Urge relevant authorizing committees to support Down syndrome programs and patient care through letters and testimony.
• Hold informational events for Members and staff here in DC to increase awareness of the disorder among Members.
• Ensure Down syndrome is adequately addressed in all relevant legislation and regulations.
• Continue to build House Congressional Down syndrome Caucus into a sustainable, dynamic political force and informational clearinghouse by increasing membership and activities.
• Work with National and Local Down syndrome groups to develop leading edge educational, medical and work related initiatives that support individuals with Down syndrome.
• Identify and strike down barriers in the law for person’s with mental disabilities.
• Expand opportunities for the Down syndrome population in education, the workplace and society at large.

Goals of the CDSC

The goals of the Congressional Down Syndrome Caucus are:

• To raise expectations and improve outcomes in education.
• To eliminate barriers to economic opportunity in employment and in programs that promotes savings and investment.
• To promote and fund research that accelerates the development of effective treatments and therapies.
• Promote the translation of Down syndrome research into effective new treatments through interdisciplinary cooperation among the various NIH institutes, the FDA, the CDC and privately funded scientists and clinicians.
• To promote inclusiveness for people with Down syndrome.
• To help provide family support services and a community of care model.
• Advocate for the rights of those with Down syndrome and make sure those rights are being enforced.

Be gentle.

Karen Gaffney, one of my heroes

I had the honor to meet Karen Gaffney and her father when Davey and Will were five weeks old at a conference.  I was a new parent with five week old twins.  David and I attended the conference at the invitation of our local Down Syndrome group in Reno. It was our first real experience meeting people and families with children who have special needs.  Karen Gaffney and her father were two of the speakers at the conference.  David, the boys and I ran into Karen and her dad in the elevator after hearing her speak.  I think it was one of the first times I had spoken to a person with Down Syndrome.

Here is a little bit about Karen Gaffney and the foundation that she and her family have created.

Th

The Karen Gaffney Foundation is a non profit organization that is dedicated to championing the journey to full inclusion in families, schools, communities and the workplace for people with Down syndrome or other developmental disabilities. Through a series of personal appearances, motivating speeches, video tapes and resource materials Karen Gaffney, a young woman with Down syndrome, and others like her will...Instill renewed hope for a full productive and inclusive life in the hearts and minds of new parents of a child born with Down syndrome or other learning disability.

Motivate parents to new thinking and positive action so they will begin immediately building the potential of their child day by day;

Heighten awareness and raise expectations of students, counselors, educators and those in the medical profession of the capabilities of children with Down syndrome to learn, grow and contribute in an inclusive setting;

Promote community involvement and action for the support of people with disabilities.

How did it all start?

Getting started on a non-profit organization that is focused on the vast POTENTIAL of our family members born with Down syndrome was the brainchild of Dr. Jean Edwards, Professor Emeritus, from Portland State University.

We were fortunate to meet up with Jean early on in Karen’s preschool years. She was a tremendous advocate for early intervention and inclusion in a regular classroom setting as much as possible. Her theme was “readiness”. What do we need to do to get our children ready for inclusion at whatever phase of life is upon us.

Jean Edwards was a mentor to us as we navigated our way through her early education years. When Karen was attending high school at St. Mary’s Academy in downtown Portland, she was a few blocks from the Portland State University Campus. Jean regularly included Karen as a guest speaker when she was teaching students a curriculum dealing with the “Exceptional Learner”.

When Karen was a senior in high school, she had to complete a “senior project” that required teaming up with a member of the community. Jean and Karen collaborated on a project with the goal to bring positive information to families, friends and educators about the potential for children born with Down syndrome. Through the course of the project, they designed and developed the video, “Journey of a Lifetime, Beginning with the End in Mind”. In addition to the video, they teamed up to form the non-profit organization to continue the effort that started with Karen’s senior project.

Karen’s non profit, the Karen Gaffney Foundation is entirely funded by honorariums she receives for her speaking engagements, video sales, contributions from others and grants. Karen takes no payment personally for her work. Any money she receives goes into the foundation to help fund her work.

Karen Gaffney competes in open water swimming.  She is known world wide for her talent as an open water swimmer.

Now, Karen is being nominated for an honor.  And you have the chance to support her.

2012 WOWSA Woman of the Year Nominees The 2012 WOWSA Woman of the Year nominees are (listed in alphabetical order of their first name): 1. Ana Marcela Cunha (Brazil), World Professional Marathon Champion 2. Anna-Carin Nordin (Sweden), Oceans Seven Swimmer 3. Annaleise Carr (Canada), Young Marathon Swimmer 4. Catherine Vogt (USA), Dual Olympic Coach 5. Diana Nyad (USA), Xtreme Dreamer 6. Esther Nuñez Morera (Spain), Professional Marathon Swimming Champion 7. Grace van der Byl (USA), Marathon Record Breaker 8. Janel Jorgensen McArdle (USA), Swim Across America President 9. Julia Washbourne (Hong Kong), Eco-Swimming Aquapreneur 10. Karen Gaffney (USA), Swimming Philanthropist 11. Keri-Anne Payne (Great Britain), British Open Water Icon 12. Pat Gallant-Charette (USA), Channel Swimming Late Bloomer 13. Risztov Éva (Hungary), Olympic Champion 14. Shelley Taylor-Smith (Australia), Pioneering Administrator 15. Tina Neill (USA), San Clemente Channel Swimmer

Click this LINK to vote for Karen.

Be gentle.

Saturday Smile

Here's a smile for your Saturday.

Davey and Huayra

William's new haircut

Be gentle.