Puget Sound Buddy Walk Annual Conference, Saturday, Oct ... · Puget Sound Buddy Walk Sunday, Oct. 7, Seattle Center Annual Conference, Saturday, Oct. 20 SAVVY ESTATE PLANNING I n
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Who decides how my family
and child with special needs
will be cared for when I’m
unable—where will the
resources come from?
How do Wills, Trusts,
Guardianships and Special
Needs Trusts help with my concerns?
How do I begin, and what are the costs?
Daunting questions under the best of circumstances!
Spend just one day at our 2012 DSC Conference SAVVY
ESTATE PLANNING, and you’ll achieve a quantum leap
in understanding. The conference runs from 9:30am-5pm,
and by the end you will have learned how to ensure the
exact care you want for your family.
To learn more about the speakers and day’s
events and to register, see pages 8-9!
The most special street
party of the year occurs the
afternoon of Sunday, Oct. 7,
at Seattle Center!
Please grab your family and
friends and come join us at
the 2012 Puget Sound Buddy Walk and enjoy a day of fun
and celebration.
Festivities begin at 1 pm and will take place in the Next
50 Plaza–the same place as last year.
Registration is free at pugetsoundbuddywalk.com.
T-shirts are just $5. Meals are $3, or $15 for a family. And
tickets for the fantastic raffle are just $2 each.
Be a Buddy,
and we’ll see you at The Buddy Walk!
See pages 3-5 for more on the Buddy Walk
and raffle and how to create a FirstGiving page.
September 2012 Newsletter
d o w n s y n d r o m e c o m m u n i t y . o r g f a c e b o o k . c o m / d o w n s y n d r o m e c o m m u n i t y
Puget Sound Buddy Walk Sunday, Oct. 7, Seattle Center
Annual Conference, Saturday, Oct. 20
SAVVY ESTATE PLANNING
I n s i d e T h i s I s s u e
Self-Advocate Column 2
Puget Soundy Buddy Walk 3
Buddy Walk raffle 4
FirstGiving information, Sleep Study 5
15th Annual Megarama Day photos 6-7
Annual Conference:
SAVVY FAMILY PLANNING 8-9
Camp Prime Time photos 10
Bee a Buddy raises $1,000 10
CanBike Camp photos 11
DSC Winter Calendar 12
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Our Goals
Build a caring, understanding, supportive community open to all individuals and families whose lives include a person with Down syndrome.
Share and nurture a climate where every human being is recognized, their strengths appreciated, and their accomplishments respected and valued.
Strengthen the network of individuals and groups working with issues affecting the lives of those with developmental disabilities and their families.
The Down Syndrome Community is a registered 501(c)(3) non-profit organization whose mission is to improve the lives of individuals with Down
syndrome and their families by focusing on education, communication and advocacy. Our service area includes the entire Puget Sound region and
Western Washington. Our members include a wide cross section of families and professionals across the United States. You can find more information
and make a tax-deductible donation through PayPal by visiting our website at www.downsyndromecommunity.org
Sean King, President
president@downsyndrome community.org
Louise Avery, Vice President, Community Relations
Liaison, dsc_relations@comcast.net
Carla Snyder, Secretary
Curtis Thelin, Treasurer
treasurer@downsyndromecommunity.org
Anne Mullis, Recording Secretary, Conf. Comm. Chair
Nick Kappes, Finance Committee Chair
Lynne Palmisano, Buddy Walk Chair
Dan Hartung
Sue Hartung
Jennifer Mullis, Self Advocate
Scott Rutledge
Laurel Sturges
Newsletter editor: Anna M. Jones
DSC Board of Directors
Upcoming board meetings: September 4 & November 6, 7-9pm, Pacific Market Center. Board meetings are open to all members.
Please let Sean know you are coming: president@downsyndromecommunity.org, 425.228.3391
17930 Normandy Terrace SW
Normandy Park, WA 98166
downsyndromecommunity.org
facebook.com/downsyndromecommunity
S e l f - A d v o c a t e C o l u m n
Leadership Retreat with SAW (Self -Advocates of Washington )
Today, I am going to talk about the Self-Advocates of
Washington (SAW) and their Leadership Retreat. It was
held Saturday, August 18 , so I had to miss Megarama Day.
To get to the retreat, I had to get up at 6:30 in the
morning. My Mom drove me to Costco where we met
Cathy in the parking lot at 8:15. I got in her car with other
self-advocates and we went to Gig Harbor.
When I got there, I had a second breakfast – a banana,
a chocolate muffin and apple juice. After that their Board
meeting started. First we introduced ourselves to the other
people there. After introductions they had to certify that a
quorum was present. The minutes from their June meeting
were read. They voted to accept the minutes. Then the
treasurer’s report was read. After that they had three items
of old business to cover.
They moved on to new business voting on a new
budget and some new positions, discussed their chapter
meetings, convention and other things. After that they
discussed their agenda for the day. They made
announcements and adjourned their Board meeting. After
the meeting we had lunch, which was Subway sandwiches,
one of my favorites.
The afternoon agenda is the reason I was there. I was
invited as a potential future leader. They had three
sessions. The first was about legislative advocacy and
voting. The second was a leadership self-advocacy
workshop and the last one was a team building activity.
Having gotten up so early, I took a nap in the car during
some of these sessions! Everyone took a short break after
these were over and then it was dinner time. We had
noodles and bread from the Olive Garden, another one of
my favorites! It was very scrumptious.
After dinner there was Karaoke with Wayne Tachell.
Then it was time to head back to Costco and meet my
Mom to go home. It was 8:15 in the evening when we got
there, making for a very long and fun day.
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Buddy Walk is Sunday, Oct. 7, at Seattle Center Raffle, food, games, booths, a Kung fu exhibition & more at the afternoon street party
The most special street party of the year occurs Sunday,
Oct. 7, at Seattle Center! Please grab your family and
friends and come join us at the 2012 Puget Sound Buddy
Walk and enjoy a day of fun and celebration!
Festivities begin at 1pm and will be take place in the Next
50 Plaza – the same place as last year.
Attending the Buddy Walk is usually an upbeat surprise
for first timers. There are booths, games, speakers, face
painting, food, music and 10,000 smiles. This event serves
as a gathering place to meet, share in our success and
improve the lives and acceptance of those with Down
syndrome, all while having a great time. The event is
capped off with a short walk around Seattle Center, where
the sight of hundreds and hundreds of supporters is on full display.
Our featured speaker this year will be Jagotjoti S. Khalsa, the author of “I’m Down With You.” This
beautiful and very human book is a remarkable look at the world of Down syndrome. Self-advocate Eliza Schaaf
will also be speaking.
Another special feature will be our pre-walk demonstration by the Academy of Kung Fu - Longview
with guest Dustin Bean, black belt holder with Trisomy 21. Who doesn’t like a Kung Fu demonstration?
We will be holding our annual raffle drawing at the Buddy Walk with tickets at only $2 each! Our
many wonderful sponsors have provided us with dozens of prizes again this year.
Autographed Seahawk and Sounder items
Gift certificates to hotels and restaurants
Toy packages and more will be given away, all courtesy of businesses around the Northwest.
Funds raised will help support the DSC and our educational, advocacy and social events. Please support these
generous donors who take such good care of us! (See page 4 for details or a full list at pugetsoundbuddywalk.com)
Make sure you register early this year! It makes it much easier to calculate the number of T-shirts and meals we need.
T-shirts are just $5, and free for those with DS. Meals are $3 a person or $15 per family.
To sign up: Go to pugetsoundbuddywalk.com. The walk itself is free, pay for shirts and meals at the Walk.
To buy raffle tickets: Contact Lynne Palmisano at 425.681.2957 or buddywalk@downsyndromecommunity.org.
To create a fundraising page: Go to firstgiving.org/14826. Please see page 5 for more on creating a page.
For questions or to volunteer or donate raffle items: Please contact Lynne Palmisano at 425.681.2957 or
buddywalk@downsyndromecommunity.org.
Be a Buddy, and we’ll see you at The Buddy Walk!
The Buddy Walk® was developed by the National Down Syndrome Society in 1995 to celebrate Down Syndrome
Awareness Month in October and to promote acceptance and inclusion of people with Down syndrome. The Buddy
Walk® has grown from 17 walks in 1995 to nearly 300 walks planned for 2012 worldwide. In 2011, more than $11.2
million was raised nationwide to benefit local programs and services, as well as the national advocacy initiatives of NDSS
that benefit all individuals with Down syndrome.
pugetsoundbuddywalk.com downsyndromecommunity.org
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A simple way to help support the DSC
UW Survey of Sleep and Activity Patterns to offer 75 $25 gift cards
Parents of children with and without Down syndrome are being asked to participate
If you have a child with Down syndrome between the ages of 5 and 18
years, please consider participating in this 45-minute online voluntary
survey. Parents of children with and without Down syndrome are being
asked to participate. So please ask your friends!
The survey asks questions about your child’s usual sleep habits and
daytime activities. The purpose of this research is to find out information
that will help guide future preventive interventions to improve the quality of life
and health of children.
In appreciation of your time, you will have an opportunity to win one of
seventy-five $25 gift cards (Target, Starbucks, Barnes and Nobel, etc.).
Please contact us at shervinc@uw.edu or 425.785.5706 for more information.
This is a University of Washington (UW) research study. This study has been approved by the UW Institutional
Review Board. The principal investigator is Shervin Churchill, a doctoral candidate at the Division of Family and Child
Nursing, School of Nursing, UW.
October is National Down Syndrome Awareness Month, and in celebration of this, the DSC is hosting the 2012 Puget
Sound Buddy Walk. What better time than now to celebrate the life of your family member with Down syndrome!
Create a FirstGiving page with photos, descriptions, achievements and more. It’s easy!
This is a simple way to let your family, friends and colleagues help us with the Puget Sound Buddy Walk and to offer
support toward our commitment to awareness and advocacy. It gives them a meaningful way to show their support.
When you set up a page, your friends are able to donate $5, $20, $50 or more in your name. It is easy to notify friends
and family through email and other social media.
Because we are an all-volunteer organization, all donated funds go directly toward sponsoring events and outreach
throughout the Puget Sound area, and a small portion helps us proudly support the national initiatives of NDSS. We’ll
have prizes again this year for the top fundraisers, announced at the Buddy Walk.
With your help, this can be a record-breaking year!
Go to www.firstgiving.com/14286 and
click ‘Start Fundraising’ to get going.
After you select 2012 Puget Sound
Buddy Walk as your event, click on
‘Join Now.’
Create a FirstGiving account if you
don’t have one, or sign in.
Choose a FirstGiving web address and
use their template to create your own
fundraising page. Set a fundraising
goal, post messages, describe your
mission and add photos and videos to
personalize your page in minutes.
You can also raise money offline and enter it manually onto your FirstGiving page.
Once your page is ready to go, easily share your page with friends using email, Facebook, LinkedIn and Twitter.
Page 6 d o w n s y n d r o m e c o m m u n i t y . o r g
Megarama Day 2012: August 18 at M-Bar-C Ranch, Whidbey Island
Megarama Day 2012: August 18 at M-Bar-C Ranch, Whidbey Island
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DSC Annual Conference
Savvy Estate Planning—the Big Picture! Who decides how my family and child with special needs will be
cared for when I’m unable—where will the resources come from?
How do Wills, Trusts, Guardianships, and Special Needs Trusts
help with my concerns?
How do I begin, and what are the costs?
Daunting questions under the best of circumstances!
Spend just one day at our 2012 DSC Conference SAVVY ESTATE
PLANNING, and you’ll achieve a quantum leap in understanding.
You’ll breathe a huge sigh of relief as you build your Action Plan!
Families in every circumstance—rich or poor, young or old—need an
estate plan, and whether or not you have a special needs member,
smart loving planning for everyone’s best future starts now! Not 10
or 20 years down the road. To make your vision happen, you must
act before change happens!
In these heavy matters, access to expertise couldn’t be more
important, but finding someone to consult is challenging. SAVVY
ESTATE PLANNING makes it easy by presenting the wisdom of our
uniquely talented and respected speakers, each with deep experience
in the field of estate planning. They’ll address broad questions, review
a wide range of options and explore your specific issues.
Check-in, Coffee and Refreshment starts at 9:30 am. The program begins promptly at 10 am. Arrive early,
have coffee and a treat—and grab a seat!
You’ll get to know our uniquely qualified speakers during the opening Introductory Panel. Attorney Larry Jones
will follow with his comprehensive Keynote Address: Savvy Estate Planning—The Big Picture!
Lunch will be a catered buffet prepared by the Alki Bakery. Reserve yours today!
In our comprehensive Afternoon Sessions, we’ll address the wide range of topics and options facing families. You’ll
have the opportunity to listen to two different presentations featuring the unique perspectives of attorneys Karen
Thompson and Stephen Waltar. We’ve structured the day so that you hear both!
Our follow-up Question & Answer Panel brings the speakers together for a Wrap-Up. Here you’ll have
opportunity to ask general questions about the day’s presentations.
SAVVY ESTATE PLANNING ends with our friendly Afternoon Tea/Coffee Hour. It’s your chance to meet
personally with our distinguished guests and fellow attendees. You can ask specific questions, share your personal
concerns and make preliminary plans.
You’ll go home with the SAVVY ESTATE PLANNING Compendium Action Planner. This collection of resources is
crafted to help you organize information, plan and actually carry out your decisions!
We’ve arranged for you to peruse a selection of excellent Publications regarding all aspects of estate planning. It’s
a great opportunity to purchase some for your home library!
By the end of your day you will have learned how to ensure the exact care you want for your family. So make your
choices happen! Don’t procrastinate or delay. Register today via email or with the form on page 9!
SAVVY ESTATE PLANNING
9:30am, Saturday, Oct. 20
Blackriver Training and Conference Center, Renton, WA
Registration: By phone: 206.842.9027 By email: anne@oldmillmicro.com By mail: Fill out form below and mail to
DSC, c/o Anne Mullis, 5276 Old Mill Road, Bainbridge Island, WA 98110—include check or bring on Oct. 20.
Payment: PayPal via downsyndromecommunity.org, or bring fee to conference, or mail (see registration address above)
Cost: $15 for DSC members, $20 for non-members. Stipends available if needed.
Name: Phone or email:
Address:
Phone or email: ADA or dietary accommodations:
Medicaid
Taxes
It’s never too soon….but don’t wait!
FOR
FAMILIES WITH SPECIAL NEEDS
Savvy Estate Planning
for Families with Special Needs
9:30am-5pm, Saturday, October 20
Blackriver Training & Conference Center
Renton, WA
downsyndromecommunity.org
facebook.com/downsyndromecommunity
Karen Marie Thompson
Ms. Thompson’s emphasis is elder law and
disability law. This includes representing
individuals and professionals in all aspects of
complex guardianships, probates, long-term
care planning, estate planning, drafting and
representing trustees and beneficiaries of
special needs trusts. She mediates
guardianship, trust and probate matters. She is a partner in
the law firm of Thompson & Howle and a graduate of the
University of Washington School of Law.
Larry A. Jones
For a quarter century, Mr. Jones has used the
Americans with Disabilities Act and its
predecessor statute to promote integration
and equal treatment of people with severe
disabilities. In 1984 his efforts were recognized
when he was chosen national Volunteer of the
Year by The Arc of the US. Larry has a PhD in Ethics and
Society from the Divinity School of the University of Chicago
and his JD from the University of Washington.
Stephen Waltar
Mr. Waltar limits his practice to areas
associated with estate planning, including
trusts, estate tax law, wills, probate, asset
protection, disability planning, charitable giving
and legacy planning. Mr. Waltar has a Master’s
in Divinity from Princeton Theological Seminary and his JD
from the University of Puget Sound/Seattle University.
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Camp Prime Time’s
Down Syndrome Support
weekend
Aug. 24-26, 2012
A party bus in Seattle has taken place over the past seven
years to benefit various charities. This year's beneficiary was the
Down Syndrome Community.
The "Bee a Buddy" bus party was held August 11, with more
than 25 participants in black & yellow bee theme.
We travelled to about ten locations (restaurants, bars and
stores) FUNdraising by selling raffle tickets, getting donations in
bee piggy banks and passing out cards to raise awareness for
the Buddy Walk and DSC.
Linda Michael and Eric Matthes kicked off the evening with
heartfelt speeches. The event raised approximately $1,000.
Linda Michael and Eric Matthes take part in the Bee a
Buddy fundraiser on Aug. 11 in Seattle
Page 11 d o w n s y n d r o m e c o m m u n i t y . o r g
Smiles and shouts of joy at 2nd annual Can Bike Seattle
The second annual Can Bike Seattle hosted 40 campers at Hangar 30 in Magnuson
Park. There were smiles, tears and shouts of joy from campers, parents and volunteers
alike, as the kids learned to ride independently on two-wheel bikes during this week-
long camp. Many thanks to the Lose the Training Wheels crew and the huge cast of
dedicated volunteers who made this happen. The DSC is proud to
co-sponsor this event with Northwest Special Families. Let’s do it again next year!
For a video of the camp, go to:
tinyurl.com/canbike2012
We are on Facebook!
facebook.com/downsyndromecommunity
17930 Normandy Terrace SW
Normandy Park, WA 98166
Down Syndrome Community Fall/Winter Calendar September
Thursday, Sept. 6: Board Meeting, open to all members.
Pacific Market Center, 6100 4th Ave. South, Seattle
October
Sunday, Oct. 7, 1-4pm: Puget Sound
Buddy Walk and Sharing Library Event,
Seattle Center
Saturday, Oct. 20, 9am-5pm: Annual
Conference: Savvy Planning for
Families with Special Needs. Renton
November
Thursday, Nov. 8, 7pm: Board Meeting, open to all members.
Pacific Market Center, 6100 4th Ave. South, Seattle
December
Date, tba: Holiday Gift Wrap. Pacific Place, downtown
Seattle. To volunteer, contact letswrap@comcast.net or go to
seattlegiftwrap.com
Saturday, Dec. 15: Annual Holiday Party and Sharing
Library event. Mercer Island Community Center,
8236 SE 24th St., Mercer Island
January
Thursday, Jan. 10, 7pm: Board Meeting, open to all
members. Pacific Market Center, 6100 4th Ave. South.
Saturday, Jan. 26: Talent Show, Highland Community Center,
14224, Bel-Red Road, Bellevue
February
Saturday, Feb. 16: Sweetheart Dance/Pizza Party/Silent
Dessert Auction and Sharing Library event. Highland
Community Center, 14224 Bel-Red Rd., Bellevue
PRESORTED
STANDARD
U.S. POSTAGE
PAID
SEATTLE, WA
PERMIT NO. 4037
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