Sunday, March 21, 2010

World Down Syndrome Day

Lots has happened since our last post....Lil Man had another series of seizures and was hospitalized.  So far, he has not had anymore.  Adjusted his meds agan and had a new EEG.  Haven't heard the results, but I'm pretty sure that nothing has changed or his neuro would have called us.

Last week, Gamma (a.k.a. my Mom) went in to the ER with trouble breathing.  Four days, an angioplasty, two stents, and an appointment with Cardiac Rehab later - she is home. 

Sunday, March 21 (3-21) is World Down Syndrome Day.  People all over the world will be celebrating our wonderful kiddos with a little something extra!  If you are so inclined, people all over the world will be releasing blue and yellow balloons at 4 p.m. your local time....

In the spirit of World Down Syndrome Day, I thought I would post some links for your enjoyment.  These came from a variety of resources including our local DSN newsletters:

The first few are for the locals - local being in Illinois.  Feel free to check them out even if you are not local:

HOISDA - Self Advocate Advisory Board:  The Heart of Illinois Down Syndrome Association Board of Directors approved the bylaws to provide for a Self-Advocate Advisory Board.  The purpose of the Advisory Board is to provide guidance and assistance to the Board of Directors  to promote awarenes of Down syndrome issues  and empower those with Down syndrome to  direct their own lives and achieve maximum independence.  The Self-Advocate Advisory Board accomplishes these directives by : Educating, Communicating, Sharing information and resources, Networking, Mentoring, Promoting respect and dignity, and Encouraging each other.  Please contact a Board Member if you are interested in an appointment to the Advisory Board.

The HEAT Program:  The Help Empower And Teach Program provides an opportunity for students to promote positive lifestyle choices among their peers.  They will focus on sexuality education and dating for the HOISDA group.  A seperate program will be offered simultaneously for parents.  The date of the presentation throught he Wellness Program at Bradley University is Thursday, April 15 from 7:00 to 8:00 p.m. at Bradley University.  You can learn more information about the HEAT program at

 Inclusive Practices in Early Childhood:  Sponsored by ProjectCHOICES - April 30, 2010, Grizzley Jack's Grand Bear Lodge, 2643 N. IL Route 178, Utica, IL 61373, Cost: $30 Professional, $10 Family Members, Questions : 630-629-0551

Family Matters Parent Training and Information Center (FMPTIC):  4Th Annual Family Conference: Resources and Inspriation for Adult Caregivers and Family Members of Children with Disabilites, Saturday, May 1, 2010 - For additional information contact: Deb Einhorn, Family Matters, 1-866-436-7842 x116 ,  or Mary Smith, STARnet Regions I & III , 217-742-5252,

HOISDA /Advocates for Access Workshops - FMPTIC:
3-29-10  Removing Barriers and Building Bridges with Your School and Being Your Child's Advocate

4-26-10  Solving the Empowerment Puzzle for Youth with Disabilites

6-7-10  FAT City: (Fear, Anxiety, and Tension) Understanding Learning Disabilites

These workshops will be taught by the staff of FMPTIC.  All sessions are FREE  and a light meal will be provided.  Register at  Time and Location: 5:30 - 8:30 p.m. at Advocates for Access CIL, 4450 N. Prospect Rd., Ste C8, Peoria Heights, IL 61616

Here is a little something for everyone!  Enjoy!

Self-Care: Why Parents of Children with Disabilites Must Nurture Themselves: From Disaboom:

The "Other Child" with Special Needs: Understanding Siblings:  From Disaboom:

Positive Discipline for Children with Special Needs: From Disaboom:

Canadian Down Syndrome Society: Lots of great information here     Also a great section on Teaching Children with Down syndrome

Think Beyond the Label:  Think Beyond the Label is committed to making the business case  for employing people with disabilites.  They are a partnership of health and human service agencies, and employment agencies with federal grants, coming together to build a uniform national infrastructure and approach that connects business to qualified candidates with disabilites.  The goal is simple: to raise awareness tha thiring people with disabilities makes good business sense.  Employes with disabilites have unique, competitively relevant knowledge and perspectives about work processes, bringing different perspectives to meeting work requirements and goals succesfully.  Hiring someone who " thinks outside the box" might be thinking too small when there's an oppoetunity to hire someone who lives outside the box.

Bike-On America:  Offers adaptive trikes, bicycles, and handcycles.  Visit their site at

Documenting Disparities in Obesity and Disability:  The recent FOCUS Technical Brief presents NIDRR-funded research highlighting the deparities inobesity experienced by youth and adults with disabilites.  Authors James H. Rimmer, PhD; Edward Wang, PhD; Kiyoshi Yamaki, PhD; and Brianne Davis, MPH conducted the research for the Disability and Rehabilitation Research Project (DRRP) "Reducing Obesity and Obesity-Related Secondary Conditions in Adolescents with Disabilites" (H133A060066), Center on Health Promotion for Persons with Disabilites, University of Illinois at Chicago.
Youth with Autism were 2.2 and 1.8 times more likely to be obese and overweight, while youth with Down syndrome were 3 times more likely to be obese and overweight compared with youth without disabilites.
The research shows that overweight and obese youth with cognitivie disabilites (Autism, Down syndrome, intellectual disability) had a significantly higher prevalence of high blood cholesterol, early maturation, and diabetes than youth with healthy weight.  The report can be found at:

Buddy Cruise: Buddy Cruise is a unique conference for families of people with Down syndrome.  This year it is being held onboard Royal Caribbean's Monarch of the Seas.  They set sail July 19, 2010.  Time is running out to reserve your cabin for Buddy Cruise 2010! At this time there are a limited remaining that will hold more than 2 guests.  Call 1-877-BDY-CRUZ option #3 to reserve yours today. (other cabin options available)  Once your cabin is confirmed, don't forget to register online at    They have started to post sessions and events on our website, check often for updates. They ahave just confirmed Chris Burke from "Life Goes On". They are thrilled that he and his band mates, Joe and John , will be joining.

Take the Initiative - TTI at Western Illinois University:WIU has applied for a grant for a three phase integrated program to give individual with Down syndrome for the opportunity to be employable college students.  This program will allow students to take full advantage of all that a university campus offers, such as learning in and out of the classroom, access to technology, campus recreation programs, performing arts, preparing for a job and above all, a chance to realize their full and often underestimated potential.

Early Childhood Inclusion Training Resources: SpecialQuests's Preschool Inclusion Series videos and training sessions explore several aspects of including pre-school age children who have disabilities in programs and settings with their typically developing peers.

IEP Checklist App for iPhone:  Did you know there is a newly developed Individualized Education Program (IEP) Checklist iPhone application? The IEP is an individualized program designed to support the educational needs of school aged students with disabilites.  This new IEP app helps parents of students with special needs become better-informed advocates by making IEP information easier to access.  The IEP app is offered free of charge and is downloadable at iTunes. 

Down Syndrome Education International:  They are launching a series of online events presenting the current research activities of DSEI and their partners.  The live events are free to access online and by telephone for families, professionals, and scientists worldwide.
Over the past , developmental and educational research has increased what is known about the learning difficulties experienced by people with Down syndrome.  THis research has improvedteaching techniques and transformed education for many thousands of young people with Down syndrome today.  However, much remains to do.  Many improtant questions remain unanswered and many specific interventions have not been sufficiently evaluated.
Their series of online events will present our current research activites and discuss how they are working to answer critical questions about development and education for our children with Down syndrome.

QR Pharma Receives US Patent to Treat Down syndrome:  Radnor, Pa. -  QA Pharma Inc., a developer of novel ddrugs to treat Alzheimer's disease (AD), announced that it was issued a U.S. Patent No 7,625,942 a "Method of Treating Down syndrome" by the U.S. Patent and Trademark Office.  The '942 patent covers use of Posiphen and analogs to treat cognitive impairments associated with Down syndrome (DS).  This patent valuably expands upon the original Posiphen and analog patent that claims composition of matter and use of compounds to lower amyloid-precursor protein (APP) and thereby treat dementia and Alzheimer's disease. (Aricept?)

USF studies show link among Alzheimer's disease, Down syndrome, and artherosclerosis:  Nearly 20 years ago Huntington Potter kicked up a storm of controversy with the idea that Down syndrome and Alheimer's were the same disease. Now the evidence is in: He was right!

And that is not all.  Down syndrome, atery-clogging cardiovascular disease, and possibly even diabetes, appear to share a common disease mechanism with Alzheimer's disease.  Dr. Potter and colleagues at the Florida Alzheimer's Disease Research Center, USF Health Byrd Alzheimer's Institutes, recently reported.

Full article:

The studies' published papers can be found at:



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