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The annual newsletter of The ALS Association Evergreen Chapter

Announcing the recipients of The Spirit of Lou Gehrig Award

Pat and Jenny Dwyer

Dr. Erik Schroeder

“I have always said that if we were able to help one other family get through some aspect of living with ALS, it will help ease our pain of living with the disease. To know we have had such an impact on the ALS community, well, it’s just overwhelming and humbling.” Jenny Dwyer, wife and advocate

“Wow!! What an honor to be recognized among so many wonderful people advocating for patients with ALS and fighting to find better treatments and a cure!!” Erik Schroeder, MD [read more AWARDS p.5]

Advocates “Hit the Hill” producing great results “More than 900 ALS Advocates. Nearly 90 people with ALS. Over 20 military veterans with ALS. One goal: to urge Congress to step up the fight for a treatment and cure. That was the scene at The ALS Association’s 2012 National ALS Advocacy Day and Public Policy Conference held in Washington, DC May 13-15.” In the photo, Brock Browning, whose father, an Evergreen Chapter board member who also had ALS, speaks to the crowd gathered for the Candlelight Vigil during the conference. [read more ADVOCACY p. 10]

1st Qtr 2013

1

Front Page

4

Perspectives

2

Growth

5

Awareness

10 New Beginnings

3

Care Services

Making a Difference

11

6-7

8-9 Walks & DoubleDay

Sponsors


GROWTH

Growth is never by mere chance; it is the result of forces working together. ~James Cash Penney

The Evergreen Chapter, committed to meet increasing needs in a personal way

Welcome to our new Chief Development Officer, Rick Meek

by Kathy Holt, Board President

Rick is a Washington native and has returned to the Northwest after working the past 8 years in Phoenix, Arizona. Having over 30 years of development leadership roles in both non-profit and for-profit organizations, he is focused on the challenges and opportunities of increasing corporate and individual contributions to support ALSA initiatives. “The Evergreen Chapter has seen new opportunities for business and corporation contributions that will lead to additional funding for patient care services, with larger funds going to research. We just need to focus on these opportunities for supporting our ALSA family,” says Meek. “I am here to make this happen.”

Greetings from our board of directors, and thank you for your support of The ALS Association Evergreen Chapter! We help people living with ALS (PALS). Every day, we strive to put our resources to their greatest advantage. We have incredibly talented staff and devoted volunteers who are always reevaluating how to best serve our community. I believe that the true measure of our success, though, often comes to us in the form of unsolicited feedback from patients and families we have helped along their ALS journey. Recently, Jenny Gore Dwyer, whose husband Pat has ALS, sent me this: “When we started our ALS gig, we really had no idea what we were getting in for, and who we would meet along the way. I’ll never forget the first day I called down to the Evergreen Chapter and talked to the patient services director. I could hear the empathy in her voice. She was just the precursor to all the lovely and dedicated people we would meet associated with the Evergreen Chapter. I figured this was a good place to have on our side in this lame disease. It was always easy to get friends and family behind us because of the good caring help you guys provide to those of us who have been hit by the ALS truck. Thank you for being there to help us get through this. While ALS is horrible, the people I have met because of it are beyond compare. That includes everyone in The ALS Association Evergreen Chapter.”

Welcome to new South Sound Care Coordinator Caryn Wise Caryn, a native of Washington, comes to us with a background in counseling and educational programs. She completed her Masters in Counseling in 2005 with an internship at Hospice. She was previously a case manager at a local non-profit working for reproductive justice. Says Caryn, “I am honored to be working with patients and families facing the life changing challenge of Lou Gehrig’s disease.”

Welcome to our new Administrative Assistant Chris Johnson

Thank you to Jenny, and to all of you who inspire us with your courage to face ALS every day. It’s hard to acknowledge that, year after year, our PALS numbers are climbing significantly. Part of this increase is because more people are becoming aware of our services. Most of the increase, unfortunately, may be the result of an escalation in ALS diagnoses. Regardless of the reason for this increase, we are committed to help all PALS.

Chris, born in Tacoma and living in Auburn, attended Knapp College of Business and earned a certificate in Business Administration. Her background is primarily in customer service and she enjoys working with people from all walks of life. In addition to administrative duties, she’ll be lending some assistance to the Care Coordinators. She is excited to be joining our team, replacing Cheryle Beck who is relishing her new position as Donor Relations Manager!

EVERGREEN CHAPTER STAFF

The Evergreen Chapter offers a unique service to each person living with ALS: a plan based solely on the needs of each individual. Some of our patients have a large support base, some have no one. Some have resources close by, others are rurally isolated. Some want our whole “portfolio” of services, others just want to access a few. Our goal is to listen and to respond effectively to each person living with ALS. We aim to help as many PALS as possible, with as many services as they need. We are committed not to add to the financial burden PALS face, so we are a completely donation driven organization.

Rebecca Moore - Executive Director Anne Eichmeyer - Care Services Director Rick Meek - Chief Development Officer Robin Hartman - Development Director Jennifer Hanson - Development Director Dede Steiner - Development Associate Cheryle Beck - Donor Relations Manager Chris Johnson - Executive Assistant Linda Denboer - Bookkeeper Mary Rebar - Care Coordinator/North Sound & AK Caryn Wise - Care Coordinator/South Sound Nadean Watkins - Care Coordinator/ Eastern WA & ID Lisa Schoonover - Care Coordinator/ Central WA & MT

2


CARE SERVICES Meet The ALS Association Evergreen Chapter’s Care Services staff! The Care Services team at The ALS Association is a resource to people with ALS and their loved ones. 2012 was another great year for the Care Services Team. Highlights included: • A Practical Solutions Workshop, which brought in various clinicians and providers to talk about some common solutions to deal with the challenges that come up with ALS • Seventeen Support Groups throughout the region, including telephonic and chat room support groups for patients and loved ones living with the disease in more remote regions • Hundreds of equipment loans throughout the region • Attendance at the International ALS/MND- Allied Professionals Conference in Chicago • Hundreds of home visits to patients throughout region Anne Eichmeyer Where I grew up: Mankato, Minnesota Where I live now: Seattle, WA Region I Cover: King County Joined the Chapter: October 3rd, 2011

NaDean Watkins Where I grew up: Caldwell, ID Where I live now: Outside of Davenport, WA on a small farm Region I Cover: Eastern WA and Idaho Joined the Chapter: September 25th, 2007

Motivation for working with people with ALS: I enjoy helping the many amazing people and families I meet feel less overwhelmed when given this terrible diagnosis. Hobbies: I have spent a lot of time traveling and exploring various parts of the world, now I’m enjoying exploring the great Pacific Northwest. I enjoy outdoor activities (running, gardening, hiking, swimming, snowshoeing), as well as reading and learning. My favorite activity is spending time with my loved ones.

Motivation forworking with people with ALS: The gratification I get helping patients and families. I love giving people the feeling of hope that they are not alone when dealing with this terrible disease. Hobbies: I enjoy attending my children’s many sporting events, such as basketball and volleyball games. I also enjoy boating, snowmobiling and going for walks. Caryn Wise Where I grew up: Toppenish, WA Where I live now: Tacoma, WA Region I cover: South Sound and Olympic Peninsula Joined the Chapter: November 14th, 2012

Lisa Schoonnover Where I grew up: Wapato, WA Where I live now: Yakima, WA Region I Cover: Central WA and Montana Joined the chapter: November 2009

Motivation for working with people with ALS: I enjoy genuine connection with people and find patients struggling with ALS to be extraordinary. End of life issues means for most of us that we drop what is unimportant and I like serving people who know what is important. Hobbies: I enjoy swimming, sewing, crafty stuff, and playing with pets.

Motivation for working with people with ALS: I feel fortunate and privileged each and every day by helping in any small or big significant way in providing support, education, research, and advocacy for our patients, their caregivers and families. Hobbies: I love to walk, hike, attend concerts, camp, read, scrapbook, and spend time with my daughter, family and friends.

Farewell to a very good friend

We are sad to say goodbye to Mary Rebar, our “Angel of the North Sound,” who leaves the Chapter in March to work for the Oregon/SW Washington Chapter of The ALS Association. The folks in the Willamette Valley are so very lucky! Farewell, Mary and we wish you much success! 3


PEOPLE MAKE A DIFFERENCE FOR Act as if what you do makes a difference. It does. ~ William James

One Dollar Difference made a difference in 2012! We wish to applaud the hard work and creativity of the participants who raised over $37,0000 dollars for Care Services and Research in 2012! Creating a One Dollar Difference event that benefits The ALS Association couldn’t be easier; post a picture, tell your story, send emails about your event and with a little elbow grease and some friends and supporters, you can have a successful adventure like these top five fundraisers:

589 Patie 309 Clin 118 Patien The ALS Assoc Center of Excel Mason Med 45 In-se

250 + Equip

The Row to Canada Crew Captain

Event

$ Raised

Dana Clark

Row to Canada for ALS

$ 8398

Tanya Roberts

Biking From Canada to Mexico for ALS.

$ 7451

Jennifer Cowper

Jennifer Cowper 2012 Coeur d’Alene Ironmanfor ALS

$ 5604

Gayle Kwon

ALS Winetasting Fundraiser

$ 3810

Valerie Wood

ALS Poker Ski Run at Silver Mountain

$ 3181

Advoc

Advocating for Fu Programs, Treat

38 Meetings with S of WA, AK 1,327 letters collec

Our Genero

Celebrate • Plan • Do More by Robin Hartman Celebrate: It’s time for you to celebrate the difference you made for those living with Lou Gehrig’s disease in 2012. You raised more than $570,000 for the Walk to Defeat ALS, more than $170,000 for the ALS DoubleDay Bike Ride and more than $115,000 for Visualize…a World Without ALS Luncheon. What an amazing accomplishment, give yourself a big pat on the back!! Plan: Now is the time to plan what you will do in 2013. How creative can you be to increase your team’s fundraising? Will you host a casino night, hold a BBQ, ask for donations in lieu of gifts? The possibilities are limitless, let your imagination run wild!! Do More: The needs and number of people with ALS are increasing and your help is vital. Our goal is to increase our fundraising by 8% this year. For those of you doing the math, that’s nearly $70,000. You can help provide more care, more support, more equipment and more research to more families living with Lou Gehrig’s disease. You can make a difference today!!!

Wanted: Volunteers to keep making a difference It’s not always obvious to our volunteers what their involvement with our Chapter means to us and the people living with ALS. Imagine for a moment if we held a Walk to Defeat ALS and no volunteers showed up! We couldn’t even get started! Who would set up the tents and tables? Who would register Walkers? Who would direct traffic? Who would hand out t-shirts, water,...encouragement ? The list goes on. Volunteers are an integral part of our mission to raise the necessary funds to provide compassionate care! In 2012, 385 Volunteers donated 4, 902 hours of their time! As our Chapter grows in size and reach, the need for more volunteers grows. Whatever your skill, there is a position in the Chapter for you.

Plus: Philan Promise Fun Legacy Socie

Community Ev

One Dollar Friends and Fam

Event Par

Walk to D DoubleDay Ride Visualize...a wo

Volunteers We are seeking people who don’t mind having some fun while taking care of their assigned tasks. Interested in the job? Call the Chapter office 425.656.1650. Or visit our Volunteer Homepage and fill out the survey!

4


PEOPLE LIVING WITH ALS

ent Visits nic Visits nts seen at ciationCertified llent at Virginia dical Center ervices

pment Loans

[from AWARDS p.1] Eric Schroeder of Flathead Orthopedic Center in Kalispell, MT was chosen for outstanding leadership in raising public awareness about Lou Gehrig’s disease by sharing his own life story to the public as a keynote speaker. • • • •

cates

For having promoted scientific / medical research to find a cure for ALS By participating in a clinical trial study as part of his treatment and actively sharing updates with his Walk teams and colleagues For having Improved the quality of life of persons with Lou Gehrig’s disease by participating and fundraising for the Missoula Walk the past two years and the Spokane Luncheon. Directly and indirectly responsible for raising over $90,000 for The ALS Association Evergreen Chapter.

As Keynote Sp eaker at the 20 11 Spokane Luncheon, Dr. Schroeder feat ured his Missoula W alk team - Flathe ad Orthopedics.

Pat and Jenny Dwyer of Kenmore, WA were chosen for their outstanding service to the ALS community by tirelessly raising awareness, sharing their own life and story to the public so they would know what it is like to live with ALS.

unding, Research, tments, the CURE

Senators and Reps K, MT, & ID cted and sent to DC

Featured in 2010 Evergreen Chapter video “Living With ALS The ALS Association Evergreen Chapter Profiles” with over 22000 views on YouTube Tireless ALS Advocates making numerous trips to Washington, DC to meet with congressional leaders. (2010, 2011, 2012) Trifecta fundraisers participating in all Chapter Events including Visualize…a world without ALS Luncheons, ALS DoubleDay Bike Ride & Fundraiser and the Walk to Defeat ALS® Directly and indirectly responsible for raising over $90,000 for the Evergreen Chapter.

ous Donors

e featured in on Pat Dwyer was er ov en se , r Videos of our Chapte e. ub on YouT 22,0000 times

nthropists: nd Members ety Members

• •

“Rookie of the Year” announced

vent Partners

McKenna Reis, a high school senior from Mose Lake, WA was awarded the Spirit of Lou Gehrig Rookie of the Year award. She was unanimously approved for the award by the Evergreen Chapter Board for her embodiment of service, selflessness, and advocacy based on the following contributions: Writes Kathy Holt, Board President, “McKenna has demonstrated outstanding leadership in raising public awareness about Lou Gehrig’s disease in Central Washington and Moses Lake High School. She has also educated others about ALS, notably through the Miss Outstanding Teen program.

Difference mily Fundraisers

rticipants

Defeat ALS e to Defeat ALS orld without ALS

Sponsors

(See page 11)

“McKenna has improved the quality of life of persons living with Lou Gehrig’s disease by participating in, and fundraising for, the Tri-Cities Walk over the past four years. Directly and indirectly, McKenna is responsible for raising over $7,500 for The ALS Association Evergreen Chapter as a walk Captain / Co-Captain, honoring her Aunt Betty Reis.”

5


PERSPECTIVES The Evergreen Chapter from a caregiver’s perspective By Cindy and Bob Ensley

December, 2012, as Bob was attempting one of his walks to the car; Bob fell to the My husband Bob, was diagnosed pavement, requiring an emergency visit to with ALS in November 2010. Being a the ER. Fortunately, he was OK (this time) craftsman operating his own business, but my stress-level had reached its maximum Bob first noticed weakness in his and I had a heart attack right there in the hands. Being a proud and somewhat emergency room. While Bob was able to go private man, Bob kept early symptoms home, I was admitted in danger of major heart to himself. trauma. What a way to enter into the holidays 2012 was a particularly difficult year after a full year of stress! for our family. Bob has many friends, business associates and customers that Today, Bob’s ALS continues to progress. he shied away from over the course He has finally agreed to a feeding tube. As of the year. As Bob’s symptoms Bob says, “living with ALS sucks” and as worsened, he wasn’t able to continue we know, it affects the patient and everyone his life’s work and Bob faded into else around them. Bob is now accepting The denial with the ALS diagnosis. Evergreen Chapter’s assistance while using In the early stages of the diagnosis, I the free equipment provided. As his primary began searching ALS on the web where caregiver, I have more support to anticipate I found The ALS Association Evergreen the help Bob and I will need throughout his Chapter and sent an email to Anne ALS journey. And, my stress-level is lowered Eichmeyer, the Care Services Director. Cindy with Bob in his lift chair, provided knowing Bob is reaching out for help. Our I immediately received a response from by the Evergreen Chapter need to manage Bob’s care is growing so we Anne answering my many questions intend and offering support. She encouraged to call on The Evergreen me to go to Virginia Mason Medical Center’s ALS Certified Chapter’s care services team Center of Excellence. There we met with a number of providers for help. Our 2012 experience who would help Bob with his emerging needs. With Anne’s is not unique so we encourage assistance, we also all ALS families to reach out became aware of The to The Evergreen Chapter Evergreen Chapter’s as early in the diagnoses as mission to provide possible. There is no need compassionate to go through this journey care, through home alone. This disease shouldn’t visits, support group cause the caregivers to have meetings, and free a heart attack; The Evergreen equipment loans. Chapters is here to assist the When we attended an families. Evergreen Chapter Support Group, it was Bob with Anne Eichmeyer Cindy steadies Bob as he uses his difficult for Bob to see the walker. other patients in their progression, but it was helpful for me to see that other families are able to cope and deal with this awful Care Connections disease and that I’m not alone. Our Care Services staff often recommends As 2012 rang in the New Year, Bob’s disease was progressing lotsahelpinghands.com., “...a network of rapidly but insisted he was ‘just fine’. Time elapsed missing the volunteers from the community – friends, best opportunities to improve his daily activities. Placement of neighbors, members of community organizations like your church, or other a feeding tube, in the early stages, was highly recommended, service groups – that provide help for the but Bob refused. Anne also recommended taking advantage person with ALS and his or her family. of using a four-wheel walker and wheelchair, but Bob refused. They often give the caregiver a break Bob’s mobility had rapidly declined. While taking small walks from their day-to-day responsibilities.” to visit his tool shed, Bob experienced falls. And finally, in early 6


AWARENESS The Dream Team’s Heather Montag - raising awareness to cure her disease (worn out) I was. My mom and dad were my champions ... they helped me, researched and supported me! Garry too! It took two years to get a diagnosis. Now Garry and I want to help all ALS victims and their families! It’s such a tragic illness. We serve on the board of directors for The ALS Association Evergreen Chapter. We participate in fundraisers; last year our ALS WALK Team raised the most money at the Seattle Walk. Garry, Vala, and I even went to Washington D.C. to meet with our Representatives and Senators to lobby for funding research and laws to help ALS victims and their families. The ALS Association has received money from the United States Department of Defense because a study determined that men and women who serve in the military are twice as likely to get ALS. So the US government is investing in finding answers.

The Dream Team @ the 2012 Seattle Walk to Defeat ALS®, Seward Park Posting on her Walk page, Heather writes: “Hello friends, this year we walk with renewed HOPE!! Awareness and Research abound-- finally!! Most recently, a study revealed that NFL players are 4 times (4 TIMES) more likely to get ALS! Why? Multiple, severe head injuries. The same day, the NFL donated $30M to the NIH to fund further research. Awareness and Research will lead to a CURE--the dream for all! Please believe you ARE helping people in need! Rest in that. Thank you.

There is still a lot to learn. We so hope desperately for a Cure! Now is a hopeful time for many diseases, including ALS ... Thank you, again. ~ Heather Montag

Even though I’m disabled, I’m not getting worse and I’m not dying. Over 99% of people diagnosed with ALS die. Some die as quickly as 18 months after their diagnosis. Tragic terrible horrendous. I’ve been with ALS for 24 years ... I’m in chronic “permanent” remission ... good news, a blessing.

Raise awareness by inviting someone to Lunch!

It began when I was 18 years old and in college. I first noticed it with my speech, when I played the piano, and how tired

Visualize...a world without ALS. Then invite your friends and co-workers to our Benefit Luncheon. They will hear first hand what it means to live with ALS, the impact it makes on people’s lives and how they can help support our Chapter’s mission to provide compassionate care. Dynamic guest speakers, engaging personalities and moving stories and presentations will make the hour and half pass quickly.

Stay connected with the Evergreen Chapter and raise awareness: Register with us to become part of our email community. Receive monthly news and occasional event invitations and updates: bit.ly/12urNaf Your contact info remains totally private.

SEATTLE APRIL 19TH The Westin

Visit our website for more comprehensive information on a number of topics relevant to people touched by ALS: alsa-ec.org

SPOKANE APRIL 26TH Mirabeau Park Hotel & Convention Center

“Like” us on Facebook. Updates posted daily on our group page along with photos and interesting links to articles of special interest to people touched by ALS.

CHECK IN: 11:30AM - 12 NOON LUNCHEON: NOON - 1:30 PM Register online or by phone. Contact: Robin Hartman (Seattle) 425.656.1650 Jennifer Hanson (Spokane) 509.863.4321. Ask us about sponsorship opportunities!

What could be easier than reading 140 characters and clicking on relevant links? Follow us on Twitter! twitter.com/ALSA_EC 7


WALK HIGHLIGHTS Top Ten Walk Teams Across the Region 1

Team Schroeder

$49,887

Missoula

2

Hecla Mining Company

$45,217

Coeur d’Alene

3

The Dream Team

$29,289

Seattle

4

TFS - Together For Scott

$20,494

Missoula

7

Team Booza I & II

$20,276

Spokane

5

Diane’s Do Gooders

$18,000

Seattle

6

Soul Treinen

$14,054

Seattle

8

Team Gronewald

$11,540

Seattle

9

Team Bob

$9,525

Seattle

ts the Debbie Witt cu

ham

ribbon in Belling

Walkers in Coeur d’Alene spell it out Michael Munstedt cuts the ribbon at the Spokane Walk

Girls don’t walk in Missoula

Join us this Fall for a Walk near you!

oma!

p in Tac

hows u oman s W r e d Won

Sep 2 Coeur d’Alene Walk to Defeat ALS – Riverstone Park Sep 7 Tri-Cities Walk to Defeat ALS – Columbia Park Sep 14 Seattle Walk to Defeat ALS – Seward Park Sep 14 Spokane Walk to Defeat ALS – Mirabeau Park Sep 21 Bellingham Walk to Defeat ALS – Squalicum Boathouse Sep 29 Missoula Walk to Defeat ALS – McCormick Park “Fun” tastic Fi Sep 28 Yakima Walk to Defeat ALS - Sarg Hubbard Park sher’s team w ith Erlice Hale and young friend in Oct 5 Tacoma Walk to Defeat ALS – Fort Steilacoom Park Yakima

Adam Parfitt at the Seattle Walk Team Goof in the Tri-Cities walked in honor of Don Sauve 8


DOUBLEDAY HIGHLIGHTS Top Ten Ride Teams 1 Team Jeannie

$15,665

2 Team Grick

$11,590

3 Team Rhino

$11,080

4 Marilyn’s Army

$10,561

5 Team Didymus: In Memory of Tom Bowhay

$9,057

6 Perkin Pedalers: In Memory of Brian Perkin

$7,935

7 Crazy 4 Carl

$6,365

8 Cindy’s Cyclists

$5,330

9 Mamma Maria

$5,169

DoubleDay Rider in the 2012 jersey

SAVE THE DATE July 27 - 28 Mt. Vernon High School webwa.alsa/doubledayride

Students from Everest College raised $1000 fo the Chapter by r massaging achi ng muscles for minimum dona a tion of $10.

Why I ride Riders of all ages, 12 and up take part in this fun event

h

Mary Rebar talks about Local Care Services at the Pasta4PALS dinner

“In the autumn of 2011, I began volunteering for Sari Lynn, a vibrant (chocolate-loving) bibliophile. My role was to assist her with reading/writing emails and letters, checking mail, and continuing to read from her floorto-floor (and nearly wall-to-wall) book collection. ... I have gotten to know Sari closely as a wonderful human being, filled with compassion, patience, and a vast knowledge base (of all things, as far as I’m concerned!). On top of all of that, she’s always ready with a smile and some sass. I continue to be inspired by Sari’s spirit in the face of her uncooperative body and I am glad to call her a friend. Thanks to [the Evergreen Chapter], Sari has access to a more functional wheelchair...an eye-tracking communications device...a team of ALS specialists, and more. I ride to in order to raise funds to support ALS research and patient services, but more importantly, I ride in honor of Sari Lynn and her amazing spirit. Although riding 85 miles may require physical motivation, I hope that it serves as a reminder that it is only a trace of the strength and fortitude that those with ALS have.” ~Ms. Christine Elizabeth Ren 9


A NEW BEGINNING The Evergreen Chapter: Ready. Set. GROW! by Jennifer Hanson

P A new calendar page is turned...check! P 2013 Event dates are scheduled…check! P Plans and budget ready for a new year…check! It brings me great joy to “THANK YOU” for the incredible support you’ve given our local ALS patients and families to help make their lives a little easier. Whether you attended one or more of our events, made a personal donation, and/or volunteered your time, you have paid it “forward” to provide critical services across our region. Thank you!

when we started in 2000, we still have a long way to go to catch up to our huge geographic region. Thanks to you and your great work in reaching out to your community, you have helped direct more patients our way from Washington, Idaho, and Montana. And yes, our Chapter also serves Alaska too! February 1st marks our new fiscal year… a new beginning. A new budget, a new plan. It’s critical to catch up with our growth. It is our mission to do our very best to cover services border to border so I’m asking for your help. I’m asking that you: Help us achieve an 8% increase over 2012 – (yep, it’s aggressive, but we can do this together!)

C C

Help connect us with business leaders in your community.

C

While we have made huge progress in the past 13 years from =

Help with attending our fundraising events to financially support our Care Services programs and build upon our technology.

Advocacy: personal stories produce good results

We look forward to having many meetings with friends like you, so you will be hearing from us soon! Reach out to us at 866. STOP. ALS or via email at compassion@alsa-ec.org

by Rebecca Moore People living with ALS, their families and caregivers, and other advocates from across the U.S. met, shared experiences and heard presentations on research, advocacy and more. Top level presenters and guests from government agencies, the research community, biotech and pharmaceutical companies, as well as academia, educated us on their fields of expertise. It was an inspirational three days, and we are so grateful for the

Steve Gibson, Becky Moore, Kathy Holt, Jenny Gore-Dwyer, Jack Finlay, and other advocates meet with Sen. Lisa Murkowski of Alaska.

from Idaho, Gail Gleason from Eastern Washington, Mo Weber, Jenny Dwyer, Andy Perr and Kathleen Holt from Western Washington, Evelyn Michel and her son Fred representing Central Washington Together we advocated for increased funding for our cause, votes for legislation to help people with ALS, and support for our efforts to move closer to finding new, effective treatments and one day a cure for this dreadful disease. We told our stories about the daily battle to live with ALS and the sacrifices patients Jack Finlay with Senator Max and their loved ones are forced Baucus, Montana to make. There is nothing more powerful than people talking to people and telling, in their own words, how ALS has devastated their lives. Many thanks to all of YOU who support our Advocacy efforts by signing letters at all our events that pave the way for successes Just three days after advocates met with members of Congress, the House of Representatives passed legislation to provide $7.5 million in funding for the ALS Research Program at the Department of Defense, a 17% increase over last year! And we more than doubled the number of cosponsors of the MODDERN Cures Act, legislation that would stimulate and expedite the development of new treatments for ALS.cosponsors of the MODDERN Cures Act, legislation that would stimulate and expedite the development of new treatments for ALS.

people from the Evergreen Chapter who attended to represent the ALS community. Many thanks to Jack Finlay, his girlfriend Morgan and some of his family members who joined us from Montana. Jack’s powerful story of being a 22 year old college student with ALS moved everyone in each of the meetings we held. Additional advocates attending were the Browning Family 10


EVENT SPONSORS PLATINUM LEVEL

BENEFACTOR LEVEL

CORPORATE IMPACT

CELEBRATION LEVEL

SIGNATURE LEVEL

IN-KIND

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CONTACT INFORMATION ALSA Evergreen Chapter.............................................425.656.1650 Toll Free...................................................................1.866.STOP.ALS Central Washington Region & MT...............................866-236-7442 North Sound & Alaska Region......................................360.733.5222 Eastern Washington & Idaho.......................................877.201.3610 South Sound Region................................................... 253.254.8909 King County..................................................................425.656.1650 Website............................................................................alsa-ec.org

W hat is ALS? ALS, also known as Lou Gehrig’s disease, is a chronic, progressive, fatal neurological disease that attacks motor neurons in the brain and spinal cord, affecting muscle function. Muscle cells waste away, resulting in increased muscle weakness, loss of motor control, slurred or thick speech and difficulty breathing or swallowing. The ALS Association Evergreen Chapter is focused on providing services, resources and programs for ALS patients, families and their caregivers. Our services include support groups, free equipment loans, education and help with augmentative communication devices.

© 2013 The ALS Association Evergreen Chapter Editor: Dede Steiner

Our vision is to create a world without ALS, while providing compassionate care for people living with Lou Gehrig’s disease today

The ALSA Evergreen Chapter 19115 68th Ave S Suite H-105 Kent WA 98032

SEATTLE WA PERMIT NO. 2386

PAID

NON PROFIT ORG. U.S. POSTAGE

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2013 Arbor