Providing support, education, and advocacy for people with
Down syndrome, their families and communities.
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October is National Down Syndrome Awareness Month
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 There are so many ways that we can all step forward to celebrate, support & educate our schools, workplaces, families and larger community during October, which is National Down Syndrome Awareness Month. Coordinate your school or office for a  Sign up to become a USOD Volunteer. Distribute Bookmarks as part of our Awareness Campaign Most of all though, give a great big cheer & hug to celebrate all the individuals with Down syndrome, their families & our wonderful community.
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| Issue: 10.2 |
October 8.2009 |
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USOD DS Awareness Bookmark
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 Contact the usod office if you would like some for your school, bookstores or libraries. Get them fast since they are going like hotcakes. fullsize image
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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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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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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.
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USOD Speaker Series - Brennan Financial - Tonight!
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 Thursday, Oct. 22, 7:00 pm
Brennan Financial Group returns to present this workshop addressing the
unique legal and financial issues faced when planning for the future of
a dependent with special needs. Topics will include guardianship
issues, Special Needs Trusts, and funding Special Needs Trusts for a
dependent. Grandparents are encouraged to attend as well.
South Euclid-Lyndhurst Branch 4645 Mayfield Road South Euclid, OH 44121, 216-382-4880 Room 2, 3rd Floor, 7:00 pm
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| USOD Siblings Conference - CANCELLED |
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 Due to low registration, we regret that we must cancel the Siblings Conference for parents and children on Sunday, Oct. 25.
Our apologies to the families who registered for the workshops. Refunds will be issued as soon as possible. Please link to this one question poll so we can inquire about why you didn't register for the conference. This would help us greatly with future planning. Sibling Conference Poll Link |
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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 National Down Syndrome Awareness Month in October.
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
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Congratulations USOD Towpath Marathon Team
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 A Huge Thank You!
Our fantastic team ran a wonderful race on Sunday Oct. 10th. With their cool USOD running shirts they helped spread the word about our community. To see additional pics click here.
If you or anyone you know is interested in our sports awareness & fundraising program contact the office or check out the usod website.
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Young Adult Karaoke
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Wed., October 28, 2009
Join us for young adult's Karaoke night at Toth's Place for a second night in October!
Please note there will be NO Karaoke date for November. We will
resume the first Wednesday of each month on December 2. $5.00 per
person.
Toth's Place 6966 Heisley Rd., Mentor, OH - mapquest
Call Rae Kinnaird at 440 944-8852 for more information. |
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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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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.
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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.
15000 Cheerful Lane Strongsville, Ohio - mapquest |
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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Ear and Hearing Considerations For Children with Down Syndrome
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Douglas K. Holmes, MD, FACS, FAAP & Randi Leonard, MS, CCC-A,
As an ear, nose, and throat surgeon and an audiologist, caring for the
ears and hearing of children with Down syndrome is among the most
challenging but yet rewarding aspects of our practice. Special
considerations of anatomical differences (such as small ear canals,
alterations in the skull base causing Eustachian tube dysfunction) and
unique physiology (such as Atlantoaxial Instability, middle ear and
inner ear hearing loss) need to be taken to insure successful outcomes.
A normally straightforward procedure such as placing tubes and removing
adenoids requires special equipment, skill, and resolve to deal with
the small ear canals and special X-ray studies and positioning on the
operating room table to avoid problems of cervical spine instability.
But the effort to improve hearing and reduce the number of ear
infections is more than made up as we watch the children grow and
develop successfully to their maximum potential, unimpeded by hearing
loss and repeated ear infections. continue article additional resources on the usod website
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USOD Disability Awareness Program
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 Schedule Your School Today!
It is a one-time educational talk designed to give students an
awareness of disabilities through a classroom speaker and activities.
The theme that is introduced is "everyone is special, different and unique!"
Additional materials are given to teachers to expand on the on-time
program so they can discuss and develop the theme in more detail. In 2008 over 3,000 school children participated in the program.
See usod website and email Krisin Dailey for info.
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Volunteer For The Up Side of Downs
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 What makes the USOD a success is YOU!
We are very excited to announce on-line registration and tracking for volunteer opportunities for the USOD. It is so easy to log in, list your interests & unique skills, then see what is available & sign up in a 1-2-3. Additionally, we will be utilizing this system to track volunteer hours for the USOD Family Grants program which requests between 5-10 hours a year.
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:
Help to Maintain Online Photo Album
Writing Press Releases - (HELP!)
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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Genetic Survey
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You are invited to participate in a research study conducted by a
graduate student, Raven Winfrey, in the Genetic Counseling Program at the University Of
South Carolina School Of Medicine. The primary purpose of this study is
to assess use of social supports and your support needs as an
African American parent that has a child with Down syndrome. Click Here
Your participation in this research is completely voluntary. Upon
seeking the survey, you can request that your name be placed in a
drawing for 1 of 2 free $50.00 gift cards to Wal-Mart. |
| 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.
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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