Puget Sound Buddy Walk Annual Conference, Saturday, Oct ... · Puget Sound Buddy Walk Sunday, Oct....

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

http://www.downsyndromecommunity.org

http://www.facebook.com/downsyndromecommunity

d o w n s y n d r o m e c o m m u n i t y . o r g

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, [email protected]

Carla Snyder, Secretary

Curtis Thelin, Treasurer

[email protected]

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: [email protected], 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.

http://www.downsyndromecommunity.org

http://www.facebook.com/downsyndromecommunity


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 [email protected].

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

[email protected].

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

http://www.pugetsoundbuddywalk.com/


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 [email protected] 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.

mailto:[email protected]

http://www.firstgiving.com/14286


Megarama Day 2012: August 18 at M-Bar-C Ranch, Whidbey Island


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: [email protected] 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


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.



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


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!


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 [email protected] 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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