I am writing to request your participation in an important research project.
The Global Down Syndrome Foundation wishes to gather information in order to open their first Adult Down Syndrome Medical Center, which will be located in Colorado. It will be the first of its kind within a 600-mile radius of Denver.
Global has created a Task Force made up of many renowned medical professionals, activists, and self-advocates from across the country to help them establish this world-class medical center for adults with Down syndrome. Part of the Task Force’s recommendation is to get input from self-advocates and their families. To this end, Global has engaged Catalyst Healthcare Research to conduct a survey regarding the healthcare needs of adults with Down syndrome.
Clearly, it is very important for Global to hear directly from self-advocates and their families about this proposed Medical Center. So today I am asking you to help Global garner as many diverse opinions as possible by taking a 15-18 minute survey.
Your responses to the survey’s questions will go directly to Catalyst Healthcare Research. The information will be encrypted for use in the research and to protect your anonymity. Names and contact information WILL NOT be shared with any organization involved with the research, including Global. However, because Global will have future questions about the Medical Center, they request that you consider agreeing to be re-contacted by Catalyst Healthcare Research to provide further input as plans evolve.
This research project and Medical Center will benefit our whole community, so I encourage you to take the survey as a self-advocate, or as a person who regularly assists an adult with Down syndrome.
To take the survey please click on the following survey link:
If you have any questions or comments about this project, please feel free to contact David Charmatz at firstname.lastname@example.org or (303) 468-4975. Or you may contact Dennis McGuire directly at Global – email@example.com or (303) 468-6663.
If you have any technical questions about the survey or have difficulty accessing the link, please contact Simon Lynn at Catalyst Healthcare Research: Simon.Lynn@catalysthcr.com or 1 (888) 297-6535 x5.
Thank for you in advance for helping with this important project that will help both you and other members of our Down syndrome community!
Estoy escribiendo para pedirle su participación en un proyecto de investigación importante.
El Global Down Syndrome Foundation desea reunir información para lograr abrir el primer Centro Médico Para Adultos Con Síndrome De Down, el cual será localizado en Colorado. Sera el primero de su tipo en un radio de 600 millas de Denver.
Global ha creado un grupo compuesto de varios médicos profesionales reconocidos, activistas, y abogados de todo el país para ayudar a establecer este Centro Médico de clase mundial, para adultos con síndrome de Down. A recomendación de este grupo, estamos buscando la aportación de personas con síndrome de Down y sus familiares. Con la ayuda de Catalyst Healthcare Research, se ha creado un cuestionario con respecto a los cuidados médicos necesarios para los adultos con síndrome de Down.
Para Global, es de gran importancia escuchar directamente de las personas con síndrome de down y sus familias de este centro medico. Les estamos pidiendo que por favor ayude a Global a recolectar múltiples opiniones diversas, tomando un formulario de 15-18 minutos.
Sus respuestas al formulario irán directamente a Catalyst Healthcare Research. La información será cifrada para el uso de la investigación y para proteger su identidad. Los nombres e información de contacto no serán compartidos con ninguna otra organización involucrada, incluyendo Global. Sin embargo, debido a que Global tendrá preguntas de seguimiento sobre el Centro Médico, solicitan que considere aceptar ser contactado otra vez por Catalyst Healthcare Research para proveer mas información con el desarrollo de los planes.
El proyecto de investigación y el Centro Médico nos beneficiaría a toda la comunidad, por lo cual le incito a que tome el formulario como una persona con síndrome de Down o como una persona que regularmente asiste a un adulto con síndrome de Down.
Para tomar el formulario por favor haga clic en el siguiente enlace:
Si tiene alguna pregunta o comentario del proyecto, por favor contacte a David Charmatz por correo electrónico a firstname.lastname@example.org o por teléfono al (303) 468-4975. O puede contactarse con Dennis McGuire directamente a Global- email@example.com o (303) 468-6663.
Si tiene alguna pregunta técnica del formulario o esta teniendo dificultades accediendo el enlace, por favor contacte a Simon Lynn al Catalyst HealthCare Research: Simon.Lynn@catalysthcr.com o (888) 297-6535 x5.
De antemano muchas gracias por ayudarnos con este proyecto importante, que nos beneficiaría a miembros de nuestra comunidad con síndrome de down.
Mom’s Coffee in Vancouver is open to anyone with a loved one who has Down syndrome. All ages of children welcome!!
Enjoy some coffee, water and some snacks. Make new friends, see old friends, laugh, learn or just simply take a break from Dr. Appointments.
Check out the EVENTS CALENDAR for future Mom’s Coffees!
Megan Schiedler Crowned Homecoming Princess
Lake Oswego High School!
Jacob Elected to Senior/Junior Homecoming Court at Newberg High School
We are very excited to tell you that Jacob was elected and announced today during the Pep assembly as the member of the Junior/Senior Homecoming Court. There maybe some responsibilities he may have related to Homecoming.
Here is the spirit week (dress up) schedule:
Tuesday: Dress like a Tourist
Thursday: Dress like a Teacher/ Teacher dress like students
Friday: School Spirit day (Blue/Gold)
Thank you for the Best Buddy Walk Ever!
If you couldn’t join us last Sunday, then you missed out on a fabulous day!
The weather was perfect, music kept us moving, lunch was yummy and the inspiration and fun was over the top!
Thank You for everyone that attended, donated, sponsored, volunteered or just supported our 2014 Buddy Walk! It was a huge success thanks to all of you.
~~ This Year’s Wonderful Sponsors ~~
We want to thank our 2014 Buddy Walk Sponsors again! We couldn’t do it without you all!
Epic Sponsors ($2,000 or more) ~
The Partners Group
DeStefano Family Foundation
Jeff and Sandy Jones Family
Abigail McNatt’s Family
Community Sponsors ($1,000 or more) ~
Tom, Mary, Peter and Sarah Lewis
Olson Pediatric Clinic
Sather Byerly & Holloway
Wolfers Heating & Air Conditioning
Friend Sponsors ~
West Coast Event Productions
Zupans Markets Lake Grove
Berkshire Hathaway Home Services Northwest Real Estate
Lake Oswego Lions
American Solutions for Business
Gerald and Sarah Bieze
Wizer’s Fine Wines
Michael Paige Photography
Dr. David Cavano, Pediatric Dental Group
DSNO Art Club!
All of us had a great time at CHAP – Children’s Healing Art Project this past Saturday creating Bird Masks, Paintings and Feathery Pencils!
1920 SE 11th Avenue
Portland, Oregon 97214
Sign up for our newsletter to be informed when our next DSNO Art Club will meet again!
Joe shakes it with the Rio style Samba band Bloco Alegria at this years Buddy Walk.
2014 Buddy Walk, Down Syndrome Network of Oregon
Written by H. Whisman, Oregon Optimist
Written by H. Whisman, Oregon Optimist
This Sunday, September 28, the Down Syndrome Network of Oregon (DSNO) will host its 2014 Buddy Walk in Millennium Park Plaza to celebrate and support families with loved ones with Down Syndrome.
Lynnette Sander, mother of three, will attend the Buddy Walk with her family for the third year in a row to support her youngest son, Ethan. “We enjoy many aspects of the Buddy Walk. Mostly it is a good time to meet new families and touch base with familiar faces of families in the Down Syndrome community,” she said.
The schedule of events includes pre-walk festivities, the walk itself, lunch, and a dance contest. “The walk is relatively short because everyone walks, including those that have Down Syndrome,” Sander said.
“[The walk] is preceded by a short presentation and music and following the walk are many activities and lunch for the children and families alike. At the walk are many booths with resources for families, including Dr. Pinter, the leading physician from the Down Syndrome Clinic up at OHSU,” she said.
The yearly event is the organization’s only fundraiser. DSNO uses the proceeds to offer programs and services for families supporting loved ones with Down Syndrome. The events provided by DSNO include: Coffee for Moms, Dad’s Dinners, family outings, educational events, and scholarships for the National Down Syndrome Society’s annual conference. The Buddy Walk has generated approximately $54,000 already, and hopes to reach its goal of $70,500 by Sunday.
This fundraiser is designed to promote awareness of the Down Syndrome community. When registering for the walk, members can create Buddy Pages, which are profiles that introduce participants to one another as well as promote sponsorship from family and friends. The walk is designed to promote a sense of community.
“I think the best thing about getting the community involved in these events is the awareness that is raised, not only about Down Syndrome, but about disabilities in general,” Sander said.
“There are so many disabilities out there and each one brings its own preconceived notions and prejudices. Events like these show people that these disabilities don’t define the person, but rather each person with a disability is uniquely gifted to … the best life for them in spite of their disability,” she said.
DSNO is a faith-based, non-profit organization that unites parents and families of children with Down Syndrome to share experiences and support one another.
“I found the DSNO website and sent an email telling our story of Ethan’s birth and that while not surprised he had Down Syndrome, we were a little overwhelmed. Within a day, I had been called by both of the founders of Down Syndrome Network of Oregon to welcome us to the community,” Sander said.
To donate to DSNO or to sponsor a Buddy, follow this link.
Read the article at The Oregon Optimist.
For Lake Oswego High players and students with special needs, flag football creates a path toward understanding and acceptance
Written by Jillian Daley
When you’re as athletically gifted as Max Oppenheimer, it’s easy to forget that something as simple as catching a football or sprinting across a field isn’t easy for many other kids.
But the Lake Oswego High senior has spent a lot of time with special-needs kids through the Best Buddies Club at school and at the Buddy Walk, a fundraiser for Down Syndrome Network Oregon (DSNO). And there’s one thing he knows for sure.
“They’re just like us,” he says.
That became even more apparent when Oppenheimer and his Laker teammates took time after practice to help kick off DSNO’s new flag football program last week.
The program, which brings together DSNO kids and mainstream high school football players, was the brainchild of LOHS seniors Kate Carter and Julianna Ramey.
“To make it happen,” says Ramey, “and to see the joy in the kids’ faces and what it does to our football team is something that caught me.”
DSNO supports children with Down’s syndrome, autism and other special needs. DSNO kids played LOHS once last year, but the program’s now going to appear at high schools throughout the area. Lakeridge and Sherwood are already on the schedule.
The program is intended to teach acceptance to all kids and inspire DSNO members, says Renee Kerr, co-founder of DSNO.
“The more people who are involved, the more we understand each other,” says Kerr, whose son is a DSNO member.
Dozens of junior varsity and varsity LOHS football players crowded around to cheer on participants at last week’s game. Within the crowd of towering teens in football jerseys stood senior Mitch Teed.
Teed, a receiver, says he loved connecting with the DSNO kids.
“It really helps them feel accepted by all of us and makes them feel like a part of the team,” he says. “It lets them know we care.”
DSNO member and LOHS junior Eli Kerr sure could tell. “Go team,” Kerr called out, radiating sunshine with his smile.
Oak Creek fourth-grader Liam Hamilton also was bursting with enthusiasm, rushing toward his mom after the game, saying, “Make way, make way. I made two touchdowns!”
“Dude, you were awesome out there,” his mom, Kristin Hamilton, told the happy boy.
LOHS sophomore Megan Schiedler beamed after the game as LOHS junior football player Tommy Underwood sang her praises.
“Megan is a really good girl; she’s really fun to be with, too,” Underwood says. “She gets to wear my jersey this year.”
Kerr says it’s important that able-bodied kids understand the limitations that other children face. Teed and Oppenheimer seem to have realized just that.
“It really puts things into perspective, how easy we have it,” Teed says. “Helping (DSNO) kids out really helps us.”
Oppenheimer says he’s learned how lucky he and many of his fellow students are. He also loves to inspire children with special needs.
“They really feed off our energy, and they have fun,” he says.
LOHS football coach Steve Coury proudly watched his players interact with the DSNO students and noted how welcoming and how much like a family they had become.
“That’s a credit to them and their families,” he says. “We talk about it a lot. It’s a lot more than a football team.”
Contact Jillian Daley at 503-636-1281 ext. 109.
Read the article at PortlandTribune.com.