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iCan Bike Camp – Groton, MA over April school vacation week

Health, Our Blog

Does your child want to learn to ride a bike? Sign up for iCan Bike Camp from April 18-22 at Lawrence Academy in Groton. The camp is a five day program that provides the supports and equipment for individuals ages 8 and older to learn to ride a bicycle.

Trained staff help individuals learn to ride a two-wheel bicycle using special adaptive bikes. Riders attend one 75 minute session each day for five days. Over the course of the week, the bikes are adjusted to challenge the rider’s balance.

For more information, visit www.icanshine.org/ican-bike-groton-ma

March 20, 2016/0 Comments/by Julie Messina
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Keeping Children and Adolescents with Down Syndrome Healthy Seminar

Health, Our Blog

For more info visit www.bu.edu/sargent

Keeping Children and Adolescents with Down Syndrome Healthy: Medical Updates for Health Care Professionals, April 7, 2016

Presented by Dr. Brian G. Skotko and Melissa J. Reilly 

Thursday, April 7, 2016 | 5:00-6:00 p.m.
Questrom’s Rafiki B. Hariri Building, Room 105
595 Commonwealth Avenue | Boston, Massachusetts


This talk will discuss new healthcare guidelines for people with Down syndrome from the American Academy of Pediatrics. Presenters will tackle common questions and concerns from patients’ parents about their sons and daughters with Down syndrome, providing answers and action steps based on the latest clinical research.

About the speakers 
Dr. Skotko is a board-certified medical geneticist and co-director of the Down Syndrome Program at Massachusetts General Hospital. He has dedicated his career to children with cognitive and development disabilities. In 2001, he co-authored the national award-winning book, Common Threads: Celebrating Life with Down Syndrome and, most recently, Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters.
Ms. Reilly works at the Massachusetts State House for Senator Jamie Eldridge and is a classroom assistant at the Learning Program of Boston as well as a motivational speaker. In 2013, she represented the United States as an alpine skier at the Special Olympics World Games in Pyeong Chang, South Korea. She was also a member of Team USA in 2005 at the World Games in Nagano, Japan. In May of 2010 Reilly was inducted into the Special Olympics Hall of Fame.
Attendees are invited to a reception following the lecture in the atrium adjacent the auditorium.

Admission is free. The public is welcome. 

Contact Katy Staley at [email protected] or 617-353-2705 for more details or to request specific accommodations. You may also contact BU Disability Services at [email protected] mailto:[email protected]

March 20, 2016/0 Comments/by Paula Moyer
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All lives matter | Karen Gaffney | TEDxPortland

Advocacy, Education, Health, In the Media

By Karen Gaffney | TedxPortland

Karen Gaffney, Self-Advocate and World-Renown Swimmer, presents her TEDxPortland talk, “All Lives Matter” and makes the case against termination of pregnancies diagnosed with Down syndrome. Articulate and persuasive, this is worth 15 mins of your time.

Watch Now

March 1, 2016/0 Comments/by Other
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1 Woman + 6 Disney-Inspired Looks

Advocacy, Education, Health, In the Media

by BuzzFeedVideos

Model Madeline Stuart transforms into six different high fashion Disney princesses.

Watch Now >

February 5, 2016/0 Comments/by Other
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Families raising children with Down syndrome find local, national support

Advocacy, Education, Health, In the Media

by Kara Bettis | http://newbostonpost.com

BOSTON – When Carl and Julie Stone discovered four years ago that their third child, Josiah, would be born with trisomy 21, or Down syndrome, they didn’t blink.

“It didn’t frighten us, it didn’t scare us, it didn’t make us sad,” Stone said. “We simply wanted to spend the last 20 weeks of the pregnancy doing everything we could to give this child every possibility to succeed.”

The Carver resident’s story is not unusual. But it isn’t common, either. Many expecting families who discover the child might be born with trisomy 21, a form of Down syndrome that comes from having an extra chromosome, don’t know where to turn, or what kind of life to expect for their baby.

http://newbostonpost.com/2016/01/22/families-raising-down-syndrome-children-find-local-national-support/

January 22, 2016/0 Comments/by Other
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First clinical trial for vaccine targeting Alzheimer’s in people with Down’s syndrome

Health, In the Media

by Nicholas Jackson | drugtargetreview.com

Plans for the world’s first clinical trial for a vaccine targeting Alzheimer’s disease-like characteristics in those with Down’s syndrome have been announced. The study will test AC Immune’s vaccine ACI-24 and is being conducted in collaboration with the University of California, San Diego (UC San Diego) Down’s Syndrome Research and Treatment Center. Funding is provided by a significant grant from the US National Institutes of Health (NIH) and an additional grant from the LuMind Research Down’s Syndrome Foundation. This is the first public/private collaboration for a clinical trial in the field of Down’s syndrome.

http://www.drugtargetreview.com/8541/content-type/industry-news/vaccine-targeting-alzheimers-in-people-with-down-syndrome/#.Vo6bUU-ng2Y.facebook

January 7, 2016/0 Comments/by Other
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Social Security Disability Insurance Program – Updated facts

Education, Health, In the Media

By SocialSecurity.gov Official Social Security Website

We recently released new fact sheets and a national issue paper on the Social Security Disability Insurance (SSDI) program. The SSDI program provides benefits to millions of workers and their families in every community across America. These State fact sheets contain statistics on the number of people who receive benefits and the average payment amounts. The national issue paper describes the five principles Congress used as a basis for establishing the SSDI program almost 60 years ago.

http://www.socialsecurity.gov/policy/docs/factsheets/cong-stats-DI/2014/index.html

October 2, 2015/0 Comments/by Other
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This Is What Sex Ed for the Intellectually Disabled Looks Like

Education, Health, In the Media

By Broadly.vice.com

A lack of sexual education has an impact in all aspects of a person’s life, so why are intellectually disabled people given so few opportunities to learn about sex on their own terms?

https://broadly.vice.com/en_us/article/a-look-at-the-sex-ed-curriculum-taught-to-the-intellectually-disabled

October 1, 2015/0 Comments/by Other
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Down syndrome From a Sister’s Perspective

Health, Our Blog

By Brianna

Most of my friends have siblings, but almost none of them have one quite like mine. As a sister of a thirteen year old brother with Down syndrome, I often go to friends to tell them a funny story or to vent about a frustrating event that just happened, all revolving around Chris. Despite the times when I think it would be easier to have a sibling without Down syndrome, Chris is probably the most outgoing, talkative person I have ever met and having him as my brother has made my life so interesting and taught me many things.

Both kids and adults with Ds often say whatever is on their mind and don’t have much of a filter. This leads to so many funny moments but also some quite embarrassing moments for me, my mom and my dad. One story that comes to mind is an event that happened in a CVS store. We were there buying medicine and there was an Indian man wearing a turban on his head. Now, Chris, being 9 years old at the time, thinks nothing of pointing and yelling out “Look Mom! It’s a genie!” We were mortified. Luckily this man was nice, found it humorous and entirely understood that Chris meant nothing by it. Three years later, it’s a great story to tell and one day, I’m sure Chris will understand the humor in it too.

Many people with Ds also act on impulse. While typical people usually think things through before acting, those with Ds often don’t. In my case, this causes my home life to be very hectic at times. A story that I will honestly remember forever happened one year while my family was on vacation in Orlando, Florida. At about 6 o’clock in the morning, Chris decided he wanted to go for a swim. He left the hotel room in his pajamas- without telling anyone. My mom finally realizes he’s gone, tells resort security, wakes me up and we all begin frantically searching. Now, this is exactly what we all love doing at 6 am! Not too long after, we found him. Chris was in the pool, exactly where he wanted to go because he is always on a mission. But, being the diligent, practical thinker he is, he knows that we should never swim in our pajamas! So, correction:  Chris was in the pool, naked, with the lifeguard ring keeping him afloat. At least my mom knows she taught him well. Safety first!

Having a sibling with Ds has truly taught me the meaning of the word PATIENCE! I even won a patience award as a counselor at a nature camp and I am sure I have Chris to thank for that one. He’s never in a rush to go anywhere and he really lives in the moment. He doesn’t rush from one thing to the next like the majority of us do nowadays. Patience seems like a very good quality to have until you throw in the schedules of the other three family members on top of Chris’s activities of karate, soccer, Boy Scouts, skiing, baseball and/or sailing (I haven’t even mentioned any of the activities I do)! We are always in a rush but, with a sibling with Down syndrome, sometimes there really is no other choice but to wait and be patient.

Although there are some struggles in having a brother with Ds, I don’t know what I would do without him. As most people with Down syndrome, Chris is very in touch with feelings and extremely empathetic. He has a way of cheering others up no matter what and Chris always picks me up when I’m down. I couldn’t imagine my life with a typical sibling because there are so many things people with Down syndrome bring to the world. I think, and many would agree, that it’s a shame there are less and less people with Ds today because when most parents find out they are having a child with Down syndrome, they abort these innocent, funny, smart and most of all loving people, just because of one extra chromosome.

 

July 3, 2015/0 Comments/by Other
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Emotional Father’s Day Video Celebrates Dads of Kids With Down Syndrome

Health, In the Media

From abcnews.go.com

Just in time for Father’s Day, a new video celebrates the dads of kids with Down syndrome — and the mutual love between parent and child.

The video was created by the Jerome Lejeune Foundation, a research and advocacy group that last year released the viral hit, “Dear Future Mom.” This year, the group decided to focus on dads.

http://abcnews.go.com/Lifestyle/emotional-fathers-day-video-celebrates-dads-kids-syndrome/story?id=31885062

 

June 20, 2015/0 Comments/by Other
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