Enewsletter October 2009
	MCDSIG Upcoming Events  MCDSIG Meeting-Friday, November 13, 2009 from 6:30-8:30pm at the Trinity Lutheran Church in Lansdale, PA.  The topic will be estate planning for children with special needs.  I will email details and RSVP info soon.   MCDSIG Holiday Party-Saturday, December 5th, 2009 from 9am-12pm at  Marjeane Caterers in Lansdale.  Breakfast will be served, there will be entertainment for the children and there will be a visit from Santa.  I will email detailed info about cost, the raffle and RSVP soon.   Upcoming Events 2009 Princeton Down Syndrome Conference Date:    Sunday, November 15, 2009 Time:    11:00 am - 8:00 pm Place:   Princeton University, Princeton, NJ The 2009 theme is education and social inclusion and will host speakers, workshops and exhibitors on topics including Sports and Academic Inclusion, Transition to Adulthood and Independent Life, Exploring Family Dynamics among others. During the conference, all children with Down syndrome under the age of 21 (and interested siblings) will attend a carnival with a personal Princeton University student volunteer. The carnival will host a variety of activities including a scavenger hunt, sports, interactive stories and games, and other stations run by Princeton student groups. Volunteer to child ratios will be as low as one-to-one. All volunteers will be trained and will receive individual information on their specific child for the day. There will also be a nursery for all children under the age of two. Complimentary brunch and ending reception food will be provided for all attendees. Closing remarks will include performances from Princeton student groups. Deadline for registration is October 30th. For more information and to register visit the event web site at: http://www.princeton.edu/~pda/   Pennsylvania’s Education for All Coalition (PEAC) presents...Planning an Inclusive and Collaborative Transition Presented by Domenico Cavaiuolo, Ph.D. East Stroudsburg University And Colleen Tomko PEAC / Kids Together Saturday, November 14 10:30 AM – 1:30 PM Maple Glen Elementary School 1581 Fort Washington Avenue Maple Glen, PA  o     Transition Planning and Vision Building begin in kindergarten! Learn how to plan for an inclusive and collaborative transition to adult life for students with disabilities. o     Please join us for this FREE training workshop open to all parents, teachers, students, and professionals. o     PLEASE REGISTER or get more information by contacting Lindsey Walker at lwalker@paedforall.org or (267) 297-1247.   Sibling Groups-play games, have fun, share thoughts and feelings Young children group for children 4-6 Time:   2nd Saturday of every month Ongoing group for children 7-12 Time:   2nd Saturday of every month               From 10:00-11:30 AM. Place:   987 Old Eagle School Road (K door)              Wayne, PA 19087. Cost:    $35.00 per session  Group facilitators: Dale Fisher, LC SW and Deirdre Miller, MA  Call Dale Fisher at 610-668-8890 or email dalesfisher@gmail.com  to reserve a space.   MARC FATHERS’ GROUP-The Fathers’ Group gives a unique opportunity for fathers to discuss the experience of having a child with disability with peers.  This peer support can help fathers to better cope with the stress they face as the result of having a child with disability and help fathers better understand what mothers experience with the birth of a disabled child. It also provides the opportunity for fathers to have an exciting one-to-one experience with their child. It gives families the ability to participate in at least t hr ee father group activities over the year.  T hr ee of the activities planned presently are a fathers’ picnic, a family train ride experience, and a hay ride festival at Linvilla Orchards. Just as important it gives mothers a free Saturday morning as respite to have time for themselves to relax, shop, or accomplish other activities that they are unable to do because of the responsibility of raising children and working. If you would like to participate in this program, feel free to email Mike Marsh at mjmarshpa@k-mdiversified.net or to phone Mike Marsh at 484-684-7007. The MARC Father ’s Group usually meets every other Saturday from 10:00 to 12:00 at our Eagleville office located at 3075 Ridge Pike, Eagleville , PA 19403-1538 .  The meeting dates for 2009/2010 are as follows:             November 7, 2009, November 21, 2009, December 5, 2009 (usually breakfast with Santa), December 19, 2009             January 9, 2010, January 23, 2009, February 6, 2010, February 20, 2010   Bounce U opened in Horsham on Oct. 3rd-They save Mondays for Special events and Fundraisers.  They charge $5 pp/ parents free.  You need to guarantee up to 15 jumpers and they can accommodate up to 70 for a 2 hr time slot.  Also, For all the preschool parents, they do special bounces during the day as well.  This could be a great fundraiser or even a great play date for the younger ones!  Go to bounceu.com for more information.   Little Wonders Scholarship, Zachary Wallace Fund - Scholarship Application   The Zachary G. Wallace Fund is dedicated to the memory of four year old Zachary Wallace, who died in January 2005 after suffering from an undiagnosed blood and immunological disease. His illness caused a spinal cord injury which resulted in extensive physical damage when he was two years old, included paralysis from the waist down and blindness. He fought for two years to walk again and did so through daily physical and occupational therapy. Learn more or make a donation.   TASH ANNOUNCES SCHOLARSHIP OPPORTUNITIES TO HELP SELF-ADVOCATES AND FAMILIES ATTEND MAJOR DISABILITY RIGHTS CONFERENCES IN PITTSBURGH THIS FALL Washington, DC - TASH, the leader in advancing inclusion and human rights for people with significant disabilities, announces the availability of scholarships to help self-advocates, parents, and families from the Pittsburgh area attend disability rights conferences that are being held in Pittsburgh this November.    Moving Forward: Transition Conference for Youth in Southeastern Pennsylvania Saturday, November 7, 2009 10 a.m. to 4 p.m. Check In/Breakfast 9 a.m. Holiday Inn 432 Pennsylvania Avenue Fort Washington, PA  19034 Conference will include: Breakfast Buffet and Lunch Plenary Session Choice of 3 Interactive Workshops Meet and Greet Reception FREE conference for youth and young adults with disabilities, including Social Security Beneficiaries, on the tools for successful transition to employment, college, or training.  We encourage family members, educators, employers, and others to attend as well.  Resources and experts will explain what may happen to your benefits and how to take the next steps toward your future. Space is limited!  Registration is required.  To register, go to www.drnpa.org.  For questions concerning registration, contact Robin Rasco at 215-238-8070 ext. 203 (voice), 215-789-2498 (TTY), or drn-phila@drnpa.org.  Sponsored by the Disability Rights Network of Pennsylvania (DRN), Protection and Advocacy for Beneficiaries of Social Security (PABSS).   Inspirational Stories   http://www.kansascity.com/703/story/1452971.html  High School football   Tom Cole breaks world Down's Syndrome swimming record By Regular Contributor Tom Cole has broken the world Down's Syndrome record for the 400m Individual Medley with a time of 6mins 36.81 secs, more than ten   Riding a Two-Wheeler to Confidence and Independence Brookville, NY -- The new Center for Community Inclusion at the CW Post Campus of Long Island University and the Down Syndrome Advocacy Foundation teamed up ...   Drawing attention to Down Syndrome, with a little help from some ... Lewis has Down Syndrome, a chromosomal disorder caused by the presence of an extra 21st chromosome. The disorder is characterized by a number of ...    Girl With Down Syndrome Saves Mother's Life ... at the Jamestown Savings Bank Ice Arena may do more than recognize the accomplishments of a local girl with Down syndrome who saved her mother's life. ...    Woman With Down Syndrome to Swim Boston Harbor In addition, she will be an honored guest at the Massachusetts Down Syndrome Congress (MDSC) Buddy Walk and Family Picnic being held the Sunday following ...   Local group helping support families who have newborns with down ... AP NewsCenter Entertainment News from AP A local down syndrome support group is getting creative in their efforts to help parents of newborns diagnosed with ...   Down's syndrome actor picks up Spanish best actor award Pablo Pineda is a Spanish actor who suffers from Down's syndrome, who stars in the Spanish movie Me Too (Yo, Tambien). His character is also a Down's ...    Afghanistan) First Ever Buddy Walk for Down Syndrome ... (SAVANNAH, GA & KABUL, AFGHANISTAN) The first ever Buddy Walk for Down syndrome to be held in a combat zone will be happening October 2 nd at Camp Phoenix   Around Broadneck: Broadneck's Mary Feik knows her way around aircraft She has Down syndrome. Her siblings, Mamie and Toby and big sister Teirney, do not have the genetic condition. Olivia's photograph, taken while reading ...   Peers Boost Student With Down Syndrome He may have Down syndrome, but his friends say they don't define him by his condition. "He's just Brent and everyone knows him and everyone loves him," said ...   Child to meet hero The Nehalem Elementary student was born with Down syndrome and has trouble communicating. “She can do just about anything any 6-year-old can do,” said ...   Rival Football Squads Let Player with Down Syndrome Score 60-Yard TD The game was already over in a blowout, and both high school team's coaches and players combined to let one kid take it all the way to the end zone. ...    Three Georgia Women Share Stories of Loved Ones with Down Syndrome ... Three Georgia women share stories about their loved ones with Down syndrome in a new Woodbine House title, Gifts 2. The release of the book corresponds with .   Lucas Wondra has achieved something only about 4 % of those who ... His achievement is particularly significant because the 16-year-old Hutchinson ( Kansas ) High School student has the genetic disorder Down Syndrome. ...   Youth with disabilities becomes Eagle Scout Lucas Wondra has Down syndrome and communicates with a few words, sign language and a PDA with a speaker and voice software. But when it comes to the Boy ...   Student with Down syndrome inspires new curriculum at school After hearing the story of Ryan Burke, a 15-year-old student with Down syndrome whose parents wanted to provide him a Catholic school education, ..   Girl with Down's Syndrome Swims Boston Harbor Making the feat even more impressive, is the fact that Karen has Down's Syndrome, and she undertook the challenge to raise funds and awareness for Down's ...   Even his parents were surprised he could read Chase, now 3, was born with Down syndrome. His parents didn't know about it until moments before his delivery at the hospital. "We were totally shocked," ...     Prenatal Repercussions of prenatal testing for Down syndrome should be known With technology advancing every day, many new prenatal tests for Down syndrome apparently guarantee to be safer, more precise, and available to women ...   New Advice For Doctors Diagnosing Prenatal Down Syndrome New prenatal tests for Down syndrome are soon to be offered to all pregnant women across the United States, yet telling an expectant couple that their child   Down syndrome diagnosis difficult for physicians, parents to discuss Few physicians receive training in telling an expectant couple or new parents that their child has Down syndrome. Yet the chromosomal condition occurs in ...     Medical Sleep Troubles Often Unnoticed In Those With Down Syndrome By Michelle Diament Most adults with Down syndrome unknowingly experience severe sleep apnea, according to new research published Saturday in the Journal of ...   Down's dementia risk 'overlooked' By Angus Crawford Not enough is being done to support the growing number of people with Down's syndrome who have dementia, say campaigners. ...   Tutorial Improves Doctor Comfort With Down Syndrome 'Virtual ... The researchers found that after taking the tutorial, there was significant improvement in knowledge of Down syndrome and a greater level of comfort with ...   Single Missing Protein May Result In Down Syndrome And Other Human ... ... key molecular player known as Pds5 goes missing, chromosomes fail to segregate and pair up properly, and birth defects such as Down syndrome can result. ..     Movies and Theater  Frank Buckley, Chief Executive, Down Syndrome Education International, CEO/President, Down Syndrome Education USA-Afraid to Look Down We are thrilled to announce that Emmy nominated actor, Cullen Douglas, will be joining us to offer a performance of Afraid to Look Down, his one man play which explores the real-life journey he took in becoming a first-time father to his oldest son born with Down syndrome. Cullen has been invited by various Down syndrome groups across the country to perform. His performance at the conference will give your group the opportunity to preview the play so you can consider bringing it to your area to raise awareness of what parents go through when they receive a surprise diagnosis of Down syndrome in the delivery room. Read more about Mr. Douglas here.   Boy's films confront Down's syndrome stigma in Serbia Despite a gloomy prognosis at birth when doctors gave him only a year to live then growing up with Down's syndrome in a country where such disabilities   Products  Ophthalmic Associates in Lansdale www.ophthalmicassociates.com now carries SPECS4US glasses- SPECS4US was created and founded in 2004 by Maria Dellapina with over 25 years in the optical industry and the mother of a four-year-old with Down syndrome. She saw a definite need for this frame line.  After two years of searching for an eyeglass frame to fit her daughter, Erin, Maria decided to use her knowledge as both an optician and mother to help Erin and others like her. For more information about the glasses visit the SPECS4US web site at: http://www.specs4us.com/   Toy R Us Guide for Differently Abled Kids http://www.toysrus. com/shop/ index.jsp? categoryId= 3261680   NEW Buddy Walk® Footwear-NDSS is thrilled to partner with Okobos, a socially-conscious company whose mission shares common themes and goals of the National Buddy Walk program. Okobos was co-founded in 2007 by Michelle and Tom Juza and is headquartered in Oneida , Wisconsin .  The Okobos brand was founded with one guiding vision—to collectively gather the threads of high quality products, morally conscious consumers, for-profit business principles and social-minded endeavors, and weave them together to create the synergistic fabric for the company. The Okobos brand is synonymous with benevolence and self expression.  Okobos is footwear that reflects who you are. Okobos shoes feature a unique attachment system that allows you to customize your shoes (called Okobits). It’s an easy and fun way to express your personal style, support a cause, and create awareness. Think of it as high style for a higher purpose!  Click here to read more.   Down syndrome products featuring footprint The symbol of the footprint with the large space between her toes became so much more than a footprint, it became a symbol. A symbol that makes a proud statement, the statement that my life and many other lives have been touched by a phenomenal person with Down syndrome. www.downsyndromefootprint.org    Downsed International US Store open Our new online store and distribution service based in California is now open, offering Down Syndrome Education International's publications and other recommended resources at reduced delivery charges to clients in North and South America and South East Asia. Find out more... http://www.downsed.org/   Book: "Down Syndrome -- What You CAN Do" Down Syndrome: What You CAN Do, was written to share positive and truthful information about Down syndrome with families, doctors, and other professionals. The material in this book is written by doctors, medical professionals, therapists, parents and siblings. What makes this book different is that it covers a vast array of topics that many other books do not. The topics in the book range from nutritional intervention, physical therapy, speech therapy, heart concerns, adoption, and even a chapter on the life stories of individuals with Down syndrome. The book is $22.73 for the printed version and $5 to download as an e-Book. The proceeds from the sales of the book will go towards purchasing more books to get these into the hands of doctors, hospitals and the public. The book can be previewed and purchased at http://stores.lulu.com/gotdownsyndrome. Website Web Site: Easy Access to Comprehensive Disability Related Information and Resources-Disability.gov is a national, comprehensive website designed to offer people with disabilities access to important information they can use. It's a one-stop website — not only for people with disabilities, but also for older Americans, employers, Social Security beneficiaries, community- and faith-based service providers and others. It features information on a number of related topics. The site is easy to navigate, and is organized into subject areas, including benefits, civil rights, community life, education, employment, health, housing, technology and transportation. Visit the new site at: http://www.disability.gov/     Legislation Legislation Update: PA State Budget Passes The state senate passed a state budget; it had already passed the House.   It is now going to the Governor for his signature, which is expected. Key budget lines are as follows: Community MR Waiver --- The Governor originally requested $800,072,000.  The final number is $802,629,000. Community Base Program --- The Governor originally requested $174,173,000, which he revised down to $161,057,000.  The final number is $158,832,000.  (A little worrisome - will have to wait to see how ODP handles.) Autism Services --- The Governor originally requested $27 million.  The final figure is $22,902,000, which should be more than sufficient to fund this year's very slow phase-in of both the ACAP and the Autism waivers at the levels recommended by the Governor.  Early Intervention --- The Governor originally requested $134,821,000.  The final figure is $127,938,000, which we understand should be sufficient to fully fund these services for this fiscal year. Special Education - The Governor originally proposed flat funding in state funds.  Final figure reflected Governor's proposal, which at least meant no cuts..   NDSS Policy Center Updates In August, Congress was out on recess, but the NDSS Policy Team was still working hard! At the NDSC Convention in Sacramento , California , NDSS presented on legislative updates, Universal Design for Learning and Post Secondary Education Programs for students with intellectual disabilities. The NDSS National Policy Center has also been preparing to participate in the National Symposium on Universal Design for Learning (UDL) and Inclusive Practices, which is sponsored by the National Education Association (NEA). NDSS is a co-sponsor of this event. The Symposium will be held on September 16, 2009 at the NEA headquarters in Washington D.C. For more information click here.   NDSS and NDSC submitted joint comments to the Department of Education on the priorities for the Race to the Top grants in the American Recovery and Reinvestment Act. The main focus was to add Universal Design for Learning language and to keep progress on IEP goals from replacing other measures of academic achievement. Click here to view these comments. Our postsecondary work continues to go strong.  NDSS was in Indiana to speak at a Down Syndrome Indiana meeting and leading the action planning for a new coalition of disability leaders who will kick-start postsecondary opportunities in the state. Sadly this month, the disability community suffered tremendous loss with the death of Senator Edward Kennedy and Eunice Kennedy Shriver. Click here to see the NDSS article in memory of Senator Kennedy. At the end of September, legislation was introduced that has long been a focus of the NDSS Policy Center . This bill will benefit individuals with Down syndrome  of all ages. The Trisomy 21 Translational Research Parity Act of 2009 (HR. 3656), or the “21 Act,” was introduced into the House of Representatives on September 25, 2009 by Congresswoman Cathy McMorris Rodgers (R-Washington), Congressman Patrick Kennedy (D-Rhode Island) and Congressman Pete Sessions (R-Texas). In the Senate, Senator Brownback (R-Kansas) will be the lead sponsor and he is expected to introduce the Senate version of the bill shortly. Specifically the 21 Act would:  Create six centers of excellence across the country to provide patient-oriented research, and conduct basic, clinical, and translational research on Down syndrome. Translational  research is the process of using basic science, or laboratory findings, through clinical trials to actual point-of-care patient applications. Establish a Down Syndrome Coordinating Committee to coordinate activities across the National Institutes of Health (NIH) and with other Federal health programs and activities relating to Down syndrome. Create a national Down syndrome bio bank and patient registry. A biobank collects, stores, processes and distributes biological materials, such as tissue or blood, and clinical data pertaining to patient. A patient registry is a database that collects clinical data on patients who share a certain condition. This information helps physicians better organize those patients' care as well as connect patients with medical research, clinical care, and clinical trials. Create a common data entry and management system for Down syndrome patient data collection and analysis. Another exciting policy development in September was that NDSS and the National Universal Design for Learning (UDL) Task Force were successful in their efforts to have UDL identified by the U.S. Department of Education (DOE) as a recommended use for the IDEA funds made available under the American Recovery and Reinvestment Act (stimulus bill). The details of the UDL recommendation can be found beginning on page 16 of a recent DOE guidance. Click here to review the details. In addition to outlining specific ways to use IDEA Recovery Act funds to implement UDL, the guidance states that districts can use these IDEA funds in coordination with general education Recovery Act funds, as well as State and local funds, to support the use of UDL approaches and strategies as a component of schoolwide programs. This is important information to share with your Board of Education.  For general information on UDL, go to www.udlcenter.org. Adoption   Dear Proud Parents of Children with Down Syndrome,   National Down Syndrome Awareness Month is upon us!    As we celebrate our own children with Down syndrome during this special time,please also remember those children who do NOT have a loving family to advocate for them.   Nearly 90% of our babies in the United States are prenatally terminated.   In some parts of the world, they are "lucky enough" to be born, but are then hidden away in orphanages and mental institutions.     The mission of Reece's Rainbow is to locate and identify each of these children, and to seek adoptive families for them.     With your help, and in only 3 years, more than (200+) children with Down syndrome and other special needs have been saved through Reece's Rainbow!   We have become  their ONE VOICE OF HOPE, and often, their only chance at finding a "forever family".      More than 300 children STILL WAIT on our website, and they need your help!   YOU DON'T  HAVE TO ADOPT TO SAVE A LIFE!   Your tax deductible gifts to a waiting child, no matter how small, provide adoption grants so families can afford the high cost of rescuing our angels. Hundreds of families are hoping to adopt them, but need the financial help to do it!   Donors of all faiths, backgrounds, and nationalities are welcome... donating is easy through Paypal!   *** We are counting on each of our local and international Down Syndrome Associations and Parent Groups to help raise awareness for this important ministry.  It is as easy as forwarding this e-mail to each of your group members, family, friends, and colleagues.***      Sponsor the adoption of a child with Down syndrome at www.reecesrainbow.org Legislation    From NDSC