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News Posted 16Apr2007

MCDSIG news:

 

  1. Spring Fling:
    1. If you haven't RSVP'ed you can still do it today without inconveniencing anyone.  We will be giving our final numbers to the volunteers tomorrow.  Follow this link to view the invite:  http://www.mcdsig.org/index2.htm#Spring

 

    1. If you or your child have a birthday on or around May 4thand would like to celebrate it at the Spring Fling, please let Rose know @ RoseHTownsend@yahoo.com

 

  1. The link page on our website is updated Useful Link Page .  With the weather's help, I finally made a useful link page that is specific and valuable to us.  If you have a favorite site that I missed, drop me a line.

 

  1. Birth Announcement - Mike, Reegan and Laurel Schwartz are pleased to announce the arrival of Eden ('Edy') Ann Schwartz born 4/5/07 at 3:08PM weighing 6lbs 15oz, 20.5 in long. 

 

Other news:

 

  1. DS on the Media

 

    1. Inspirational Stories:

                                                               i.      Dance teacher who twirled with the best takes on a new challenge

                                                             ii.      Mitchell inspires teammates

                                                            iii.      Opening up the world of words to disabled kids

                                                           iv.      Simple Truths Presents: Johnny the Bagger

                                                             v.      Thunder Player Finds Joy in Family Struggles

                                                           vi.      140-mile ride for Down's Syndrome boy

                                                          vii.      Living With Disability in the Family 

                                                        viii.      Differences unite Idyllwild middle schoolers

                                                          ix.      'Me home:' The region loses a beautiful person

                                                            x.      Learning to ride all on their own

                                                          xi.      For One Woman, An Unexpected Gift

                                                        xii.      Why it's an actor's life for Sarah

                                                      xiii.      Being different does not mean Down and out for Khairul

                                                      xiv.      Aggies revel in volunteering with special needs children

                                                        xv.      Film's star has an important lesson to share

 

    1. Bucks County DSIG in the news – See link, http://www.mcdsig.org/images/herald article.pdf .  The Bucks County Herald ran an article on April 12 about the BCDSIG. While, the author didn't accurately quote the scientific definition of Trisomy 21, the article will hopefully raise awareness locally about Down syndrome, our group and encourage new members to join us. The article was scanned and is attached in PDF format.

 

    1. News: Channel 6 (Philadelphia, PA) to Cover "Gifts" Book for Mother's Day
      Channel 6 in Philadelphia will be doing a feature story on the book "Gifts" this coming Mothers Day. We will provide more information closer to the actual air date.

      On a related note, the new edition of GIFTS will be featured on the New Release table at Barnes & Noble from June 5 through June 18. That means the book will be placed on a table at the front of stores along with other new nonfiction. Then, in July and August, GIFTS will be given top-shelf placement in the Children with Special Needs section of the store. By purchasing copies of GIFTS and encouraging others to do the same, we can ensure that the thousands of parents who will be in our shoes in the coming months and years will be able to find the support they need.

 

    1. NPR Morning Edition: Eunice Kennedy Shriver's Special Olympics Legacy
      Eunice Shriver has been a lifelong advocate for people with mental retardation; she founded the Special Olympics in 1968. Read and listen to the recent profile on NPR's web site.

 

    1. Dear Abby Column:    PEOPLE WHO SLUR THE DISABLED NEED COURSE IN BASIC MANNERS

       

 

    1. From NDSS, help with an upcoming article:  We have been contacted by a reporter with the Wall Street Journal who is writing a story regarding nutritional/dietary supplements, and claims made that these supplements can improve cognition in individuals with Down syndrome. This reporter also plans to address claims that these supplements have curative power in other medical conditions such as Cystic Fibrosis, ALS, and Muscular Dystrophy. If you have any experience in this area and would be willing to be interviewed for this story in the WSJ, please contact sue@ndsccenter.org .

 

    1. Medical News

"Fragile X and Down Syndrome May Share a Common Cause"   Read the full article online by clicking here.  There seems to be similarities on neurological wiring.

 

  1. Sites of Interest

 

a.       Blog: "Lovely and Amazing"  One mother's journal about her life and love for her daughter with Down syndrome. Her list of DS-related resources and links is about one of the most comprehensive you will find on the web. You can check out her blog by clicking here.

 

b.       www.addpa.org, Adults With Developmental Disabilities – Is a complimentary organization to ours for adults.

 

c.       http://www.interventioncentral.org/. Intervention Central offers free tools and resources to help school staff and parents to promote positive classroom behaviors and foster effective learning for all children and youth. The site was created by Jim Wright, a school psychologist and school administrator from Central New York. Visit to check out newly posted academic and behavioral intervention strategies, download publications on effective teaching practices, and use tools that streamline classroom assessment and intervention.

 

  1. Information Meetings/Seminars and Conventions:

 

    1. 31st Annual Philadelphia Conference on Developmental Disabilities

      Date:    Friday, May 4, 2007
      Time:    8:30am to 3:00pm
      Place:  3535 Market Street, 16th Floor, Philadelphia PA (entrance on 36th Street)
      Cost:    $10 per parent, family member, or consumer
      Deadline: Registration deadline is April 24

      The annual Philadelphia Conference on Developmental Disabilities began in 1977 as a way to bring together parents, family members, persons with developmental disabilities, and professionals in the field. Its purpose is to provide a forum to discuss areas of mutual concern, to foster partnerships among these groups, and to keep abreast of the latest developments.

      Workshops topics include:

·         Creating the Job You Want

·         Real Self-Determination Is For Everyone

·         Building Local Communication Mentors' Networks

·         Aging with Developmental Disabilities

·         Experience on Inclusion

·         Pharmacological Treatment of Behavioral & Emotional Problems for Individuals with Disabilities

·         What is HIP? Health Intervention Program

·         You Can Take It With YOU! Assistive Technology and Transition from School to Work

·         Sexual Abuse Awareness Training for Self-Advocates by Self-Advocates

·         Choosing Entrepreneurship As A Good Fit

See the linked PDF, titled "DD Conference 2007.pdf" for a registration form and additional conference information.

 

    1. The Philadelphia Right to Education Task Force and Arc Advocacy Present John Tomassini, Director, Bureau of Special Education, PA Department of Education
      Mr. Tomassini will share his vision for students with disabilities in Pennsylvania and take questions from the audience. (He will answer systemic and policy questions and not individual student situations or comment on past administration issues.)

Date: Thursday, April 19, 2007
Time: 9:30am-12noon
Location: ARC of Philadelphia , 2350 W. Westmoreland St, Philadelphia, PA 19140

Please RSVP to: info@philadelphialtf.org or call  215-400-5151

c.       Eastern PA Down Syndrome Center Presents: "Preparing for the Future" Workshop
Keynote speaker is Cathy Riley. Breakout sessions are titled "Preparing for the Future" with Jonathan Pletcher, MD and "Legal/Financial Planning for the Future" with Ira Fingles, Esq.

Date: Saturday, April 28, 2007
Time: 8:30am - 12pm
Cost: Members $10.00; Non-members $15.00
Location: Lehigh Valley Hospital Center (I-78 and Cedar Crest Blvd.)

Please RSVP by April 20, 2007 to 610-402-0184. Cost includes workshop and a continental breakfast.

 

4.      Social Events

a.       "Sesame Place Challenge" for Variety Club Members
Sesame Place will open its doors exclusively to Variety Club children and families. You must be a Variety Club member and must pre-register for the event. Please visit the Variety Club (Philadelphia Region) web site by clicking here for more information.

Date: April 29, 2007
Time: 9am - 4pm
Location: Sesame Place, 100 Sesame Road, Langhorne, PA 19047

 

b.       Eastern PA Down Syndrome Presents: 1st Annual Comedy Night (new date)
Proceeds benefit the Eastern PA Down Syndrome Center.  http://www.epdsc.org/events.htm

Date: Friday, May 18, 2007
Time: 8:00pm (door open at 7:00)
Cost: $25.00
Location: The Marian Inn, OLPH Church, 3221 Santee Rd., Bethlehem, PA

 

 
 
 

 

News Posted 29Mar2007


1. World Down Syndrome Day 2007 events and articles:

TV's Corky spreads awareness of Down syndrome -Chris Burke helps raise awareness on 3-21

Beyond the Diagnosis - A great 3 part series run by Indiana TV news

A royal audience for little Kiwi princess Laura -A royal celebration down under

Photo Montage - A montage put together by the makers of Gifts, a book about mother's reflecting on how children with DS enrich their lives. Check out the rest of their site.


2. Conferences/Information Meetings/Guest Speakers:


a. What: Meet Michaela D'Aquanni Dr. D'Aquanni is a dynamic woman that has been heard at national conferences such as the National Down Syndrome Congress and Federation for Children with Special Needs. Dr. D'Aquanni has been an Associate Professor in the Department of Special Education at Kennesaw State University, Georgia. Dr. D'Aquanni has taught in diverse general and special education settings, been an administrator at the secondary school level, a statewide consultant for systems change, and an educational resource. She sees herself first and foremost as a teacher-a facilitator of learning among students, parents, teachers, and others. Michaelae is a gifted and inspiring speaker and she says, "Our children are our greatest gift, our best resource, and our hope for the future. Thus, we must create for them an accepting environment in which each will learn, grow and achieve his or her dreams."
When: April 10th at 7:45 P.M
Where: Pendleton Hall on the Bryn Athyn College campus
Info: Bryn Athyn. For more information call 215-947-3665 or 215-947-4479.
Cost: Free


b. What: International Mosaic Down Syndrome Association - A conference specific to Mosaic DS!
When: June 29th - July 1st
Where: Virgina Commonwealth University/Medical College of Virginia
Richmond, Virgina
Info: http://www.imdsa.com/conf2007.htm
Cost: Cost associated, see site.

c. What: Families: the Essential Piece of the System Puzzle- Question & Answer Session with Kevin Casey, Director of the PA Office of Developmental Programs
and Bureau of Mental Retardation Services
"Chat and Chew Lunch" with Kathy Sykes, Director of Philadelphia Mental Retardation Services
Informative Workshops and Information Sessions will include:
*Community Resources (presented in Spanish and English)
*Fire and Safety for Individuals with Disabilities
*Support Coordination Expectations and Responsibilities
*Understanding Social Security Benefits
*Transitioning into the Work World
*Life-Sharing - An Overview
*Specialized Services of the Philadelphia School District Panel Presentation
When: Saturday, April 14, 2007, 9:00 AM to 4:00 PM
Where: 3535 Market Street, 16th Floor, Philadelphia, PA 19104
Info: See attached brochure, "2007 conference announcement Final.pdf"
Cost: Free for Families Professionals-$15.00 Fee.


d. What: Cross Disability Post-Secondary Education Conference- Post-secondary education (PSE) opportunities for adults with intellectual disabilities have grown phenomenally over the past five years. There are currently 105 programs listed on thinkcollege.net which is the website funded by the U.S. Department of Education, National Institute on Disability and Rehabilitation Research, and the National Center for the Study of Postsecondary Educational Supports.
When: May 18 & 19th 2007
Where: Fawcett Center Columbus, Ohio
Info: http://www.dsagc.com/attachments/949PSE%20Conference%20Brochure.pdf
Cost: see site

3. Free Tool kit on teaching and assessing students with disabilities: Parents Materials - The Office of Special Education and Rehabilitative Services at the U.S. Department of Education has released a CD version of the Tool Kit on Teaching and Assessing Students with Disabilities: Parents' Materials, designed to assist parents and states in their efforts to work together to raise the achievement of all students with disabilities. The Parent Tool Kit compiles materials identified to augment the previously released CD, Tool Kit on Teaching and Assessing Students with Disabilities, and offers a collection of resources on the same substantive areas addressed, including assessment, instructional practices, behavior, and accommodations. These new documents were written specifically for parents and include information they need as they work with schools to ensure that their children are receiving a quality education. Information on the toolkit can be found at http://www.osepideasthatwork.org/index.asp .

4. For Better of For Worse - character with DS introduced. Visit the comic to see how this raises awareness.

5. Laurie Berkner features a BCDSIG member's daughter in a video. See Julia Anne Shirey, on Jack's Big Music Show on or visit the site on Jack's Big Music Show and you will see a video playing with some pictures underneath the video, you may have to scroll over to the picture with Laurie Berkner (green background) and it is entitled "The Farm Song". Julia is the horse and also appears in the flower patch.

6. Our recent events We had 2 events recently.

a. The age social was fun, I attended the young one and lots of fun was had while we shared experiences, I got reports that the older social was an equal success. Thank you to the Citro and Davis family for hosting the events. Pictures are posted on the site, click here to view.

b. The eat out went great. We had about 9 families in attendance. We were scattered throughout the restaurant and through time. This seemed to maximize the awareness factor we were looking for, and I saw many people introducing themselves to members they didn't know. It was great to socialize, have good food and raise awareness at once. Next year we might try to find a place that shares profits with the group.

7. Family Announcements - If you would like to make an announcement, please send it to me and I will send it out with the next newsletter. I normally put out newsletters 2x/month. (the need for this was brought to my attention when many asked me for baby updates)

 


- - - - - - - - - - - -

 

News Posted 13Mar2007

1. World Down Syndrome Day 2007 is March 21! Down syndrome International (DSI) has officially earmarked March 21 as World Down syndrome Day (WDSD). The date was chosen to signify the uniqueness of Down syndrome in the triplication (trisomy) of the 21st chromosome and is used synonymously with Down syndrome. All DSI members and related organizations worldwide are encouraged to observe the WDSD together with the community in an appropriate manner. MCDSIG will be celebrating and promoting awareness by having an eat out. Our families will be eating at the Montgomeryville Olive Garden.

2. Downsyn Forum - Downsyn Forum is a message board full of information for us. If you are interested in meeting new families you might want to join them at their Sesame Place meet-up that will be on May 18, 19 and 20. Tickets for Sesame Place on Saturday and Sunday will be discounted for the group ($10 for adults; $19 for children over age two). Check their message board for details.

3. Conferences/Information Meetings/Guest Speakers:

a. Ideas to Grow On: The DVAEYC Early Childhood Conference

Date: Friday, March 16 & Saturday, March 17, 2007
Place: The Philadelphia Convention Center, 12th & Arch Streets, Philadelphia, PA

Workshops of special interest to parents of children birth to 2 years of age will find expert presenters sharing ideas on:

· How Children Learn

· Books to Grow On

· Planting Musical Seeds

· Linking Love and Limits

· Creative Movement for Infants and Toddlers

· Money Smart Kids

· Simple Science

· No Cost, Low Cost Arts and Crafts

· Building Math Minds

There will also be 80+ vendors of child-friendly learning materials and books, musical performances on a mini-stage, puppet-making, hands on arts and crafts and many helpful family service organizations.There will also be a parent networking lunch.

The Conference is FREE to parents of children in Birth to 2 Infant-Toddler Early Intervention. Parents can visit www.dvaeyc.org for a full conference brochure, or contact your Service Coordinator or Carla Wilson. To Register or for Conference Information call Carla Wilson at 215-685-5920 ASAP

b. Sharing Power in Advocacy with Resources and Knowledge of Services (SPARKS) - Come and join our SPARKS Support Group on Tuesday, March 20, 2007 at the new MARC office in Eagleville from 10:00am to 12:30pm. This will be a six week information meeting to address your child's IFSP and IEP concerns to help you navigate through the special educational systems. We are a group of parents willing to share our knowledge of the system. Bring your IFSP or IEP to the meeting along with any questions you might have. Please contact us at Sparksgroup@aol.com if you are interested in attending.

c. Meet Michaela D’Aquanni Dr. D’Aquanni will address the annual meeting of New Church Challenge, on April 10th at 7:45 P.M. in Pendleton Hall on the Bryn Athyn College campus.

She is a dynamic woman that has been heard at national conferences such as the National Down Syndrome Congress and Federation for Children with Special Needs. Dr. D’Aquanni has been an Associate Professor in the Department of Special Education at Kennesaw State University, Georgia. Dr. D’Aquanni has taught in diverse general and special education settings, been an administrator at the secondary school level, a statewide consultant for systems change, and an educational resource. She sees herself first and foremost as a teacher—a facilitator of learning among students, parents, teachers, and others. Michaelae is a gifted and inspiring speaker and she says, "Our children are our greatest gift, our best resource, and our hope for the future. Thus, we must create for them an accepting environment in which each will learn, grow and achieve his or her dreams."

Anyone interested in education should find this speaker inspiring. We are delighted that she has taken time from her classroom to visit Bryn Athyn. For more information call 215-947-3665 or 215-947-4479.

d. Collaborative Planning Session For The Montgomery County Local Task Force - Friday, March 23, 2007 – 10:00 a.m. Montgomery County Intermediate Unit – West Norriton, 1605 W. Main Street, Norristown, PA 19403, 610-539-8550 Conference Room C1/C2 Refreshments will be served. Learn the purpose of the Local Task Force and share ideas and topics for planning upcoming meetings. Meet our Professional Co-Chair – Joe Krueger, Special Education Supervisor - Spring-Ford Area School District, Parent Co-Chair – Carol Esing, Montgomery County ARC Representative – Mike Owens, Director, Department of Human Services –Joe Roynan, MCIU Acting Director of Special Education – Dr. Jeanmarie Mason.

e. Easter Egg Hunt - Eastern PA Down Syndrome Center

Date: Saturday, March 24; 11:00-12:30pm
Place: Upper Saucon Park, Preston Lane, Center Valley, PA

Come and enjoy watching the children search for eggs, nibble on a snack and sit on the Easter Bunny's lap. Please respond by March 20th to Kate at 610-861-8831 or Mary Ellen at 610-865-4235.

f. The North Penn High School Special Education Theatre presents The Little Mermaid - On March 16, 2007 at 7 PM. Tickets are $5 each; $3 each for student groups accompanied by an adult. Tickets for The Little Mermaid can be purchased at the North Penn High School K-pod reception office from 8AM – 3PM Mondays through Fridays or at the door on March 16th. Ticket Order Forms are available at www.npenn.org . Spend a special Friday evening enjoying the music, dance, color, romance, and excitement of The Little Mermaid. Contact Katie Lloyd, School and Community Services Specialist Lloyd.Katie@npenn.org OR 215-853-1032.

4. Book - "For the Love of Matthew" Growing Up With Down Syndrome

5. Employability – If you made it to the CHOP symposium you heard an interesting speech about Project SEARCH, a program attached to the Cincinnati Children's Hospital that is dedicated to workforce development of individuals with significant disabilities that benefits the individual, community and workplace. This kind of program is popping up in other places. Here is an article from the Philippines that is recognizing that DS adults are a valuable asset to the workforce.

6. Private School Placement – Follow this link to an article that talks about private schools paid for by public school districts.

7. Alzheimer and Down syndrome – Below are 2 articles that give discuss this:

a. "A Cruel, Dual Blow for Special Patients"
Down syndrome and Alzheimer's go hand in hand. As lifespans rise, so do problems. Click here to read the article.

b. Pinholes prick their future?
Orlando Sentinel Mon, 05 Mar 2007 1:43 AM PST
Those with Down syndrome are living longer but face more risk of Alzheimer's. Rich Wilber has a sunny smile, bright eyes and a confident way about him. He's athletic, has a girlfriend and a good job.

8. Trisomy 21 Update Newsletter (Winter 2007) -- from the Trisomy 21 Program at the Children's Hospital of Philadelphia Follow this link to read the latest newsletter from the T21 Program at CHOP (in PDF format).

9. NDSS asks for our help to Ensure Funding for Lifespan Respite Care Act
The Lifespan Respite Care Act allows states to compete for grants to Aging and Disability Resource Centers in partnership with a public or private non-profit state respite coalition or organization to make quality respite available and accessible to family caregivers regardless of age or disability. The law allows grantees to build on federal, state and local respite resources and funding streams, and would help support, expand planned and emergency respite, provider recruitment and training, and caregiver training.

Click here to read the Respite Act proposal in whole (in PDF format).

You can also find out more about the Lifespan Respite Care Act on the National Down Syndrome Congress web site .

News Posted 27Feb2007

1. Big News! - A recent study claims that a drug helped the memory and maybe the IQ of mice that have a Trisomy 21 like makeup. There is also similar affects with the use of Gingko extract. Read up on the articles below:

Scientific American (w/ Gingko reference)
UPI Article
Medical News Today
New Scientist (about Gingko)

2. Our families touch others - I've witnessed first hand how my son can change someone's mood or brighten someone's day. A MCDSIG member brought to my attention a recent article from the Disney Insider Newsletter that makes this point.

A Special Time with Ariel

We were in Florida with my 9-year-old daughter and she was getting signatures from the Princesses for her book. We were kind of in a hurry, but appreciate all the work these actors put into their signatures. While we waited we noticed a Downs Syndrome boy ahead of us. He was not a little boy in stature, but Ariel got him to sit next to her and she signed his book. He was flabbergasted that she was talking to him. She paid him a lot of attention. As he walked away he kept looking back and bumped into a fence (he was "in love" my daughter said). Ariel then blew him a kiss (even though she was on to the next person) and he just stopped, even though his dad was trying to go on to the next attraction. I was very touched by that, as was my daughter. She said she was glad she did not miss that. Good job to that Ariel actor, I will not forget that.

3. Disney Accommodates Special Needs - Also our families are entitled to a special pass which will cut down the wait time at all of the attractions. A MCDSIG member took advantage of this and found it helpful and allowed them to get so much more enjoyment out of the parks.

4. Inspirational Stories in the News:

President To Award Local Woman With Down Syndrom

Girl with Down Syndrome Takes The Court

Just Another Soccer Player

LIfeguard With Down Syndrome Excels

5. Movies

a. "My Brother" The Movie -- in theatres March 16, 200 - The movie summary: This is a story of two impoverished boys, one whom has Trisomy 21, and the bond of love they have for each other. The bond, forged in their youth by their mother and made under life's most desperate circumstances, is unwavering even in the face of adversity. One brother, trying to get free of oppressing debt, falls prey to ruthless men, setting into motion life-threatening events that test their greater-than-blood bond. This leads to a decision that only an epiphany, and courage, can overcome. The Website

b. Through the Same Door -a movie about inclusion. It can be viewed online at YouTube:
Part 1 , Part 2 , Part 3 Or you can order the film at http://www.throughthesamedoor.com.

Brief Description:
It's about a young man, Micah, and a portion of his inclusive journey in high school and college - and the benefits it provided to his fellow classmates. Micah is a member of KASA (Kids As Self-Advocates). When Micah was in elementary school and received special education services in a segregated classroom, he told his parents he wanted to go "though the same door" that his peers entered through when going to school - which is what prompted the title for this movie. This film was the winner of the 2006 TASH Image Award for the Positive Portrayal of People with Disabilities.


6. New Position Created in PA - Secretary of Public Welfare Announces New Office of Developmental Programs. In an effort to continue addressing the needs of Pennsylvanians with disabilities, Department of Public Welfare Secretary Estelle B. Richman today announced the creation of the Office of Developmental Programs.

7. Learning Opportunities

a. Training from Vision for Equality - "Understanding the Mental Retardation System For Families, Caregivers, and Individuals" Come learn about the system from families who know! Topics like registering in the system, supports and services, and what to do if you have a problem accessing support. Click here for flier and schedule

b. The Law and Disability Presentations - There are talks given by lawyers from Hinkle, Fingles & Prior. They are free but require registration. Contact Sandra (215) 860-2100 www.Hinkle1.com . Here are the details

Medicaid, Social Security, and Health Insurance Issues
Feb 20, 7-8:30pm Willow Grove, PA

Planning for the Future: Guardianship & Estate Considerations
March 6, 7-8:30pm Radnor, PA

Understanding the New IDEIA: Overview of Special Education
March 20, 7-8:30pm Valley Forge, PA

8. Fundraiser - The Eastern PA Down Syndrome Center of Trexlertown is having a comedy night to raise funds. $25 gets you in on Friday, March 16th @ 7pm (doors open @ 6) at The Maian Inn in Bethlehem. Call Julie @ 610-509-3505 for information.

9. Name Changes - Many groups are doing away with "Mental Retardation" in their names and titles, as evident when a reparable journal changed their name to Intellectual and Developmental Disabilities.

10. Play Group Wanted in Eastern Montco/Bucks County - This is a message from a parent: I am looking for anyone who wants to start or already has a play group for 3,4 or 5 year olds for my daughter Brooke. she will be 4 years old in April and attends Rainbow Academy 5 mornings a week. I'd love to get her together with some of her peers. If anyone has any info either here or Montgomery County, please let us know. We live in New Hope but don't mind traveling anywhere. Thanks Annette, annette3199@aol.com or home 215-862-4545.

 

News Posted 12Feb2007

 

1. Our Favorite Couple: Do you remember Sujeet & Carrie? They were the DS couple that got married. You can catch up with them on Oprah's Valentines Day show! Read up on the couple at their website .

2. Last Minute Flowers? Then you should get them from here . 12% of all sales made on the site will be donated to the NDSC and as a benefit to you and all supporters; flowerpetal.com has agreed to not charge any additional fee for flower delivery! This includes same day.

3. Wright's law website: Do you want accurate, reliable information about special education law, education law, and advocacy for children with disabilities? Wrightslaw.com has thousands of articles, cases, and free resources.

4. Tri21 upcoming events: March looks like it will be busy:

a. All day Saturday, March 3rd - Fourth Annual Trisomy 21 Symposium: A Course for Parents. Click here for more information.
b. Saturday evening, March 10th - I will send out a definite along with details, but it looks like we'll be having age appropriate social gatherings at 2 member's houses. Parents will get to socialize and the children will be able to interact with each other. I'm really excited about this!
c. Wednesday evening, March 21st - This is 3-21 day! This is a time to bring awareness about DS in our community by doing something fun with your child in public. We will be eating out. This year we've selected The Olive Garden in North Wales. Click here for the map. We aren't going to be able to all sit together or even to eat at the same time, but I would like to have an idea of who will be coming. Please RSVP if you plan on going out and at what time to rosehtownsend@yahoo.com .


 

News Posted 02Feb2007

1. More about the Barnes & Nobel (B&N) Event. You probably already heard that Barnes & Nobel is putting on a special needs awareness event. The CEO of B&N is a strong supporter of special needs awareness and is a DS parent himself. Our 2 area B&N locations will have events, the details are below. They asked for our help to make it a great event. Rose and I personally can't help, but Rose and Josh will be attending the Montgomeryville story that starts at 10am.

The Montgomeryville Barnes and Noble is looking for volunteers to help with the special needs awareness event being held on Monday, February 26th from 6-8pm. There will be a songwriting workshop as well as an opportunity for children to share their poems and art work. If you are able to help, please contact Deb at 215-699-3099 or crm2976@bn.com.

The Jenkintown Barnes and Noble is looking for volunteers to help with their special needs story time event being held on Tuesday, February 20th at 10:00am. They are also interested in finding someone who has a talent or craft they could teach or share with the children during the story time. If you can help, please contact Darren at 215-886-1863 or crm1893@bn.com.

2. "Ask an Advocate" Event: Got questions? Maybe advocate Mike Owens has the answers! Mike Owens with the Montgomery County Association for Retarded Citizens (MARC) will answer a variety of questions about educational issues. This event is hosted by The Special Education Advisory Council (SPEAC) and The School District of Upper Dublin on Tuesday, February 20 from 7 to 9 p.m. at the library of Maple Glen Elementary School. For more information, please call the Special Education Office at 215-643-8981 or Karen Salomon, SPEAC parent representative, at 215-646-3638.

3. And speaking about MARC: I would like to bring their website to everyone's attention click here for website . It is full of information. Rose and I are about to embark on that 3 year old milestone and we plan on using Mr. Owen's and his resources to make sure we have a smooth transition.

4. Where do the therapists get all those cool gadgets? This Website was brought to my attention. They specialize in Sensory Processing Disorder (SPD) Sensory Integration Products, Equipment and Resources.

5. Sensory Event (at the shore): I don't know anything about this, but this event was brought to my attention. I doubt we'll get to go, but if anyone does, maybe they can do an information sharing presentation at one of our meetings. Below is the announcement:

Sensory Processing Making Connections - Learn and Play at the Beach 2007
We're set to go on June 24- 26, 2007 for the 3rd Annual Learn and Play at the Beach 2007. We planned another exciting conference at the beautiful Golden Inn in Avalon, New Jersey. Our speaker this year is Laura Barker, MS,OTR. As a Sensory Ready Associate, Laura is recognized as one of a select group of professional across the country who have demonstrated advanced expertise in using and teaching the principals and techniques associated with the Ready Approach. In this two day workshop, she will present a brain-oriented explanation of behavioral issues associated with autism and related conditions and offer practical strategies to improve performance. Again, we are offering this as a conference package with an all-inclusive two night stay at a beautiful beachfront resort with meals, parking and beach tags included! We've sold out for two years and expect this conference to do the same quickly! Come join the fun in the sun as we 'Learn and Play at the Beach". If you need more information, please contact Marie DiMatties at 856-428-9290 or Marge Walsh at 856-863-9046.

6. Reading (and speech) Assistance: Here are 2 companies that specialize in helping our children read. The Love And Learning site is highly recommended by our members who have older children. The program starts for infants and progresses to advance learning for older children. Josh has some of the DVDS and he likes them as much as Baby Einstein. I don't know much about the other site, but I've heard that it has helped with children read. See the site here .

7. Back to trisomy 21 testing: Another new test is capable of doing a noninvasive test of a fetus's genotype. It uses fetal DNA extracted from blood samples taken from the mother to screen for chromosomal abnormalities. I don't know if this would be classified as a screening or diagnostic test because the fetus genes are being taken, but it is not 100% accurate. The clinical data used 60 women and had 1 false positive and 1 false negative. Read more about it here.

8. The tax tip thing: I already sent this out twice (sorry about that). But like I said this information is pretty comprehensive for tax breaks specific for our families. It is worth checking out. Here is a copy of the IRS ruling so you can see it straight from the horse's mouth.

9. Have you seen our Holiday Party pictures yet? See them here. . If you want any of yours added (or removed), please let me know.

10. Our events for the year: Is posted on our upcoming events page. Check it out! Mark your calendars. Details and reminders will follow.
News Posted 24Jan2007
Group Business

1) From our last meeting: We were given a presentation on special needs trusts by the people at Met Desk. The presentation was very informative. If you would like information on how to contact Met Desk, please let us know so we can help you. A group member offered the name of his attorney, who helped him set up a special needs trust. The attorney's name is Douglas Dye and he can be reached at 215-545-3474. He is located at 1608 Walnut Street in Philadelphia.

2) Treasurer Wanted: We announced that Bruce Cartwright would like to find someone to take his place as treasurer. If you are interested, please let us know let us know and we can get you in touch with Bruce to talk about what the job would involve.

3) Spring Fling Committee: We would like to set up a Spring Fling Committee. We are looking for your ideas for the event as well as your participation in implementing some of those ideas, for example, helping to organize food and entertainment. The involvement is minimal; we can discuss things over email. If you are interested, please let us know . As of now, the Spring Fling is tentatively set to take place on the first Friday night in May (May 4th).

4) SAVE THE DATE: March 21st (get it? "3-21") is a day when many families of children with Trisomy 21 try to bring awareness to their community by doing something fun with their child in public. We would like to have a family night out during which any interested group members would eat out with their own family at a local restaurant. If you have any thoughts on which restaurant might be a good place to try this, please let us know . We could also try to localize this event by selecting several restaurants in the county at which to meet, so group members could see other families in their immediate communities.

Tri21News

1. SAVE THE DATE: The fourth annual Trisomy 21 Symposium is to be held on Saturday, March 3rd at CHOP. Veiw the Save the Date Here. More information will be available soon.

2. Special Needs Awareness Event: On Monday, February 26th, Barnes and Noble in Montgomeryville will host a special needs awareness event. There will be a preschool story hour at 10:00am. From 6-8pm that evening, there will be a songwriting workshop for older children. The children's own poems and stories will be combined with music. You can contact Deb at the Montgomeryville Barnes and Noble with questions at 215-699-3099.

3. Adopt a child: "Reeces's Rainbow" is a registered 501©3 charity organization which promotes and facilitates the international adoption of children with Down syndrome. In other parts of the world, children with Down syndrome and other disabilities are shunned and hidden in orphanages out of shame and fear. They LANGUISH in mental institutions where they are sent when they turn just 4 years old. In the last 6 months of 2006, we placed (18) children with Down syndrome with loving adoptive families. Our goal for 2007 is to place (40) more. With your help, we can make this dream a reality!!!

4. More on Prenatal Screening: The last news that I sent out I spoke about the The American College of Obstetricians and Gynecologists' recommendation that all women get screened for a potential Trisomy 21 baby. Since then the National Down Syndrome Congress (NDSC) condemned the recommendation. View their position here. Also a column was published in Newsweek opposed to it. Read column here. Whether parents are to be screened or not, I feel it is important that information is available to the families who receive a positive result. Our welcome/information packets have useful information in them. Please ask you OBGYN if they would be willing to distribute our packets to parents. Email us if you have permission to drop packets off at your doctors and we will get the packets to you.

5. Air Travelers with Disabilities Hotline: The U.S. Department of Transportation has a toll-free hotline that provides general information to consumers about the rights of air travelers with disabilities, responds to requests for printed consumer information, and assists air travelers with time-sensitive disability-related issues that need to be addressed in "real time." The line is staffed from 7 a.m. to 11 p.m. Eastern time, seven days a week. Air travelers who experience disability-related air travel service problems may call the hotline to obtain assistance. Air travelers who would like DOT to investigate a complaint about a disability issue must submit their complaint in writing or via e-mail at: Aviation Consumer Protection Division, 400 7th St. SW, Washington, D.C. 20590, Telephone: 800-778-4838, Web: http://airconsumer.ost.dot.gov/hotline.htm Email: airconsumer@ost.dot.gov

News Posted 10Jan2007

1) Our next meeting is an information meeting on January 19, 2007. Visit our website for details. Please RSVP by Jan 17th.

2) New Director of the Bureau of Special Education for the Pennsylvania Department of Education - Dr. Rhen was removed as PA Dept. of Education Bureau Director of Special Education and replaced by John Tommasini. This has caused some controversy. You are probably familiar with the Gaskin Settlement Agreement. This was approved by the Court just over 1 year ago. It was the result of 11 years of litigation by families and organizations who wanted a better opportunity for Pennsylvania's children with disabilities to be included in their neighborhood schools with their peers. It imposes significant responsibilities on the Director of the Bureau of Special Education, including approval of corrective action plans for school districts found out of compliance with Least Restrictive Environment requirements; the development of a comprehensive training and technical assistance plan; and enforcement of new PDE policies on compliance with the inclusion mandate. Joseph Gaskin, the plaintiff of the Gaskin Case and the reason for the Gaskin Agreement in PA, is opposed to the staffing changes and he recommends that we participate in this online petition.

3) Group Recommends Down Testing - The American College of Obstetricians and Gynecologists is recommending that every pregnant woman, regardless of age, receives screening for Down syndrome. Read more about it here. Obviously this has stirred up more controversy. Our welcome packets are currently in the area hospitals, we are going to target OBGYNs to make sure that people receive information and support early.

4) Common Dental Conditions - There is an interesting article on page 8 of this newsletter that discusses common DS related dental conditions. (This is a big pdf file, but the article is worth it)

5) 18 year old with DS seeks penpal - Matthew T. is an 18 year old boy who has Down syndrome. He's interested in finding an email penpal who is near the same age and also has Down syndrome. Matthew and his Mom, Dawn can be emailed at cc-dmtermini@comcast.net .


News Posted 14Dec2006

1) Our next meeting is an information meeting on January 19, 2007. Visit our website for details. An RSVP will be sent out shortly.

2) We had a lot of fun at the Holiday Party. There was an overwhelming response to the raffles. Thanks to everyone who donated or participated, we might be able to skip fundraising for the Spring Fling! I'll keep you posted. I would like to add pictures of the party to the website. If you have a favorite, please email me 1 or 2 of your favorites.

3) Article: The December/January 2007 National Geographic Kids magazine featured an article entitled, "I Have Down Syndrome, Know Me Before You Judge Me". This article is about a girl named Melissa Riggio and her perspective of her struggle for acceptance. Here's the link for the article.

4) Related to the above article: If you are familiar with the business world, the name Riggio might sound familiar. The article above is about the daughter of Steve Riggio, CEO Barnes & Noble. See Steve's Bio from their website. This is also the family that is blazing a trail for post secondary education. They donated $250, 000 towards customizing continued education for our children. Here's an article about it. The more I read about them the more I like them.

5) Did you hear that there are NEW guidelines for inclusive education K -12 in PA? This is very important for any child in the public school system. The NEW BEC on Least Restrictive Environment and Educational Placement can be viewed at this website

6) Interesting information: To date, there had been only two documented cases of men with DS fathering pregnancies. There is now a third. A paper was just published from India about a 26 year old man with nonmosaic DS married to a 22 year old female with normal chromosomes. They had a normal baby boy.

7) This section is dedicated to opportunities for our children school age - adult. There are prizes and assistance for many of these opportunities:

o "30 VOICES OF LD" COMPETITION - NCLD is looking for works of art, photography, poetry, videos, essays, short stories, websites, blogs, etc. that express what life is like for individuals with LD. Three $500 grand prizes will be awarded for outstanding works from each one of the following age groups: Children (Ages 4-13), Teens (Ages 14-17), and Adults (Ages 18 and older). Additional selected submissions will be showcased on our Web site and at our 30th Anniversary benefit. For more information go to this website . Submittal deadline is February 7, 2007.

o OPPORTUNITIES FROM VSA ARTS RENASCENCE 07: AN INTERNATIONAL JURIED SHOWCASE OF ARTISTS WITH DISABILITIES - VSA arts is seeking innovative, experimental artists whose work demonstrates the creative fusion of visual art with interactive or sensory experience; communication and information technologies; movement or performance; and/ or audio production. Open to artists (ages 18 and over) who are committed to their artistic progress and who have a physical, cognitive, or mental disability. Applicants from a wide range of practices, such as digital arts, installation, and time-based media, are encouraged to apply. Deadline for submission is February 2, 2007. For more information go to this website

o VSA ARTS WRITING PROJECT CALL FOR FLASH FICTION, POETRY, AND THE SPOKEN WORD - The ultimate goal for this project is for writers to provide their mind in words. For more information go to the website

o PLAYWRIGHT DISCOVERY AWARD - This award recognizes young adults who promote awareness of disabilities through creative playwrighting. Award recipients receive scholarships, a professional production of their script at the John F. Kennedy Center for the Performing Arts, and a trip to Washington, D.C. to see the performance. For more information go here

o CLAY AIKEN ABLE-TO-SERVE GRANTS - Clay Aiken Able-To-Serve Grants support youth, teachers, youth-leaders, youth-serving organizations, and organizations serving people with disabilities in implementing service projects for National and Global Youth Service Day, April 20-22, 2007. Maximum Award: $1000. Eligibility: Youth (ages 5-25); teachers and youth leaders; organizations that work with youth ages 5- 25; or organizations that serve people with disabilities. Projects must be either youth-led or co-led by youth and adult allies. Deadline: November 30, 2007. For more information go to their website


News Posted 22Nov2006
1. The Least Restrictive Environment (LRE) and Educational Placement for Students with Individualized Education Programs (IEPs) code of PA was updated in early Oct. Follow this link to view it: The Link

2. Here is a wonderful gift idea for families with a loved one with Trisomy 21, teachers, advocates, therapists, or any friends! You may recall at the Buddy Walk in 2004, we displayed beautiful artwork by the artist, Michael Johnson, a man in Illinois who has Down Syndrome. Michael paints children with Tri 21, animals, nature, and now has created a wonderful piece called "Beatitudes for Friends of People With Special Needs" - suitable for framing. Please click on this link to see Michael's work: