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Designate USOD
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 Make a Double Difference!
Please consider designating your UW donation to USOD. Thanks!
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Join Our List
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USOD
Board of Directors |
Casey
Atkinson
David J. Bruening
Allan Buzzelli
Renee Chappell
Denise Cirino
Sandy Donahoe
Scott Eitman
Sue Groszek
Debbie Marks
Michele C. Raia
Ann Regan
Katherine E. Schubert
Lisa G. Trifiletti
Ken Vinikoff
Brian J. Weiss, DPM
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Legislative Action Alert - Support the "21 Act"
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 NDSS Action Alert Click Here!
Senators
Brownback (R-KS) and Sherrod Brown (D-OH) and Representatives Cathy McMorris
Rodgers (R-WA), Patrick Kennedy (D-RI), and Pete Sessions (R-TX) introduced the
Trisomy 21 Translational Research Parity Act of 2009 (S. 1762/H. 3656)
or the "21 Act." The 21 Act is
aimed at expanding, intensifying and coordinating Down syndrome translational
research across the National Institutes of Health (NIH), the Centers for
Disease Control and Prevention (CDC) and other Federal agencies.
Specifically,
this legislation would:
- Create
at least six Down Syndrome Translational Research Centers of
Excellence that provide an optimal venue and infrastructure for
patient-oriented research, and conduct basic, clinical, and translational
research on Down syndrome.
- Establish
a Down Syndrome Coordinating Committee to coordinate activities across the NIH and with other Federal health programs
and activities relating to Down syndrome.
- Develop
a National Down Syndrome Patient Registry and Biobank, through cooperative
agreements at the CDC to provide clinical care for patients with Down syndrome;
- Coordinate research and clinical activities through
the Down Syndrome Translational Research Centers of Excellence
with the activities of the National Down Syndrome Registry and Biobank;
and
- Create a common data entry and management system for
Down syndrome patient data collection and analysis.
It
is very important for us to identify more cosponsors for the legislation.
Please take a few minutes to call or write your Senators and Representative
today to ask them to cosponsor 21 Act! You can reach your
Representative by calling the Capitol Switchboard at 202-224-3121.
If you don't know who your Representative is, go to www.congress.org
and enter your zip code in the upper right corner. We have included both
a script and email/letter template to help you reach out to these
offices. Call Sara Weir (sara.weir@bakerd.com/202-312-7475)
with any questions.
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Fall 2009 USOD Family Grant Program
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 Deadline October 30, 2009
Family Grants are made available to the membership of the Up Side of
Downs to provide assistance to individuals with Down syndrome. The
purpose of this grant is to provide money for anything that directly
improves the life of the individual with Down syndrome. The funding for
Family Grants comes from donations and fundraisers. Download & open the following application.(you must have adobe reader 9 installed on your computer) You can submit electronically or print it out & snail mail it to the office. Additional info is at the usod website. If you have any difficulties, questions or would like a paper copy sent to you in the mail, please contact the USOD office. ***When submitting electronically please make sure we send you a confirmation email of receipt****
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USOD & Dr. Skotko at UH, Rainbow & CWRU
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How to Give a Diagnosis of Down Syndrome
Last Friday Dr. Brian Skotko, of Boston Childrens Hospital, presented three times on the topic of How to Give a Diagnosis of Down syndrome. The day was sponsored by the Up Side of Downs of Greater Cleveland, with an additional grant provided by the NDSS to video the talks and make them available on-line. It was a fantastic day in which OB/Gyns, Residents, Medical Students & Pediatricians all joined together to learn and listen to our community. Special thanks to USOD parents Deb Bruening & Casey Atkinson for participating and most of all to Dr. Skotko!
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Halloween Dance - Teens & Young Adults
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 Friday, October 30st
Dress up in your BOO-tiful costume & get down on the dance floor for the USOD Halloween Dance for teens and young adults 15 and up.
Cost: $6, plus a canned food donation for the food bank.
Fellowship United Church of Christ
30040 Ridge Road, Wickliffe, OH - mapquestrsvp to Rae at 440-944-8852
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Writeslaw Book - All About IEP's
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 Pre-order Discount Available
- answers
more than 200 frequently asked questions & introduces key legal issues
- outlines
your rights & responsibilities and explains the law in plain language
you can understand
- provides
the reference source of information, the law, regulation, OSEP publication,
or commentary
At the Writeslaw website & pre-order for Dec. Delivery.
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Grandparents Group
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 Monday, November 2, 10:00 am
Get together for great conversation, support & friends. Since the last meeting overwhelmed the Starbucks we are moving to a larger space at the Cleveland Clinic Community Room. USOD will bring coffee & pastries. Free. 5001 Rockside Road, Independence - mapquest, please rsvp to Gay McVeigh. (next meeting 12-7)
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Baby & Toddler Group
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 Monday, November 2, 6:30 pm
Great
time will be had by all moms, dads, grandparents, babies & siblings. Come
hang, chat & play. Feel free to bring blankets and small toys.
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Help USOD Plan for 2010
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 Programming Committee Meeting
Step forward and help us to plan for 2010 and make exciting things happen. Come with your ideas, dreams & calendar. We will be meeting November 10, 2009 7:00 pm at the Cleveland Clinic Community Room B 5001 Rockside Road, Independence, OH, mapquest, please rsvp the USOD office.
Also we are getting into gear for the 2010 Reverse Raffle. If you are interested in joining the planning committee or want to assist in any way, please email Sheila. More details will follow soon. Thanks!
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Host a Dress Down for Down Syndrome Day
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We are looking for companies,
schools, and individuals across Northeast Ohio to help celebrate Down Syndrome Awareness.
If you are an Office Manager, Human Resources Director, Principal or Superintendent, Dress Down for Down Syndrome Day is a great motivator and morale booster for employees, while promoting unity for a great cause. If you are not in the position to approve this event at your work or school, please pass this opportunity on to the right person
It is a fun, rewarding day that benefits individuals with Down syndrome and their families thoughout Northeast Ohio. For each event you will receive a FREE Dress
Down for Down Syndrome Day kit containing:
· Registration Letter · Posters · Pledge Information Sheet · Awareness Stickers for Participants
Special thanks to Timco Rubber for hosting a DDfDs Day last week.
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Down Syndrome Family Research Study
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"My Kid Has More Chromosomes Than Yours!": The Journey to Resilience and Hope in Parenting a Child with Down Syndrome
This research project will include online surveys and qualitative interviews with parents that will explore the journey to resilience and hope experienced by families with a child with Down Syndrome (DS). This research will identify the key resilience factors in families who have successfully navigated this difficult transition and provide important information and resources for families facing this journey in the future.
The
project coordinators are Nicole Springer, Ph.D., Texas Tech University and
Briana Nelson Goff, Ph.D., Kansas State University, both parents of children
with Down syndrome. here is the flyer for more info & survey link.
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Parent Training Modules Help Families
Promote Children's Social and Emotional Skills
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The Center on the Social and Emotional Foundations for Early
Learning has developed parent training modules that help families promote
children's social and emotional skills, understand children's problem
behaviors, and use positive approaches to help them learn appropriate
behaviors. The modules are available at vanderbilt.edu/csefel/parent.html
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Volunteer For The Up Side of Downs
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 What makes the USOD a success is YOU!
Log in here to become a USOD Volunteer - So check it out, log in & don't hesitate to contact the USOD office with any questions or suggestions.
Some current opportunities we are looking for:
Host for Westlake Baby Toddler Group
Holiday Party Dec. 13th Setup, activities & clean up.
and of course always in the USOD office!!
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| Medina Mom's Night Out |
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 Thursday, November 12, 2009
Join us for Ladies Night Out in Medina on the second Thursday of each month. Medina Moms have been meeting for over three years and welcome new members to join us for fun and friendship! We meet at the Starbucks/Chipotle in Medina. (next night is 12-10)
Our group also enjoys holiday get-togethers, picnics, and other social events. We also participate in a monthly playgroup at the Medina MRDD the third Monday of each month. This is in conjunction with Help Me Grow.
For more information or to rsvp, call Jamie Varga, 330-220-1045.
Chipotle Mexican Grill, 899 N. Court Street, Medina
Starbucks, 897 N. Court Street, Medina
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Lake Metroparks Adapted Programming
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 November Schedule
FLOOR HOCKEY
(5 sessions) on Tuesday November 3 at 5:30pm at Broadmoor School,
BASIC MIME
CLASS (2
sessions) on Friday Nov. 6 at 6:30pm at Willowick
Lakefront Lodge
DISCO FEVER DANCE on Sunday November 22 at 5:30pm at Pine
Ridge Country Club. Contact the Park Registration Department at 1-800-669-9226
or www.lakemetroparks.com for more
information.
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Workshop on Floor Time Play - Galvin & Associates
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NOVEMBER 9, 16 & 23
·Learn to tailor your play skills to increase your young child's coping & problem solving skills.
· Participants will learn how to encourage cognitive, emotional & moral development through specific play techniques. See flyer for full details.
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Partners in Policymaking Leadership Program
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 Deadline - November 13th
The Arc of
Greater Cleveland is facilitating the Partners in Policymaking® leadership
training
program between the months of January - May 2010. Partners in Policymaking®
is an
internationally recognized training series that is designed for adults with
disabilities
and for parents of children under the age of 12 with disabilities.
Please call at
(216) 622-0755
extension 14 or email efakan@thearcofgreatercleveland.org
for
more
information. Application Letter, Details & Application.
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USOD Mission
To provide support, education, and advocacy for people with Down syndrome, their families and communities.
Vision
The Up Side of Downs is committed to building a community where
people with Down syndrome are independent and have the opportunity to
reach their fullest potential.
History
In the early 1980's, a handful of parents whose children had Down
syndrome began to meet informally over coffee for socialization and
support. Nearly thirty years later, with the help of a lot of coffee
& caffeine, their vision and hard work has taken the Up Side of
Downs from a grassroots parent movement to a staffed nonprofit
organization joining over 800 families throughout Northeast Ohio.
We invite you to connect with our with our support community to join us at one of our many programs & services, do research in our comprehensive resource directory, join our on-line family support network, enjoy our scrapbook photo gallery and so much more.
Contact the Up Side of Downs of Greater Cleveland.
The Up Side of Downs of Greater Cleveland
23230 Chagrin Blvd., Suite 640
Cleveland, OH 44122
phone
216.464.USOD (8763)
fax 888.708.USOD (8763)
e-mail
info@usod.org
web www.usod.org
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