“The Board of Directors of the Northwest Down Syndrome Association does not endorse any candidates. As a group, we serve a very diverse population. Our 600 families represent all political persuasions, and we are united by our love for our children, and our passion and conviction to fight for a more inclusive community.”
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We Need Your Help!
The Buddy Walk on Washington is an invaluable opportunity to meet with your Congressional representatives (and their staff) in Washington, D.C. where they decide issues of critical importance to you and all people with Down syndrome and their families.
We Need Your Help!
And there are many ways you can get involved in this important advocacy event:
You can attend the Buddy Walk on Washington and meet with your Member of Congress and their staff to discuss the future you want as a self-advocate or the future you want for your family member with Down syndrome.
You can share information about this important advocacy day to friends, family members, colleagues, community organizations and others who may be willing to come to Washington for two days in February to help make change.
With your participation in the Buddy Walk on Washington, you can help us grow an army of advocates. Together we can send a powerful message to our elected officials!
For more information, click here or call 1-800-221-4602 .
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Recently the topic of genetic testing has been in our local news. The NWDSA was honored to provide information to the Oregonian and KOIN 6 news. (See links at the end of this article.) The board of the NWDSA feels strongly that what is vital at this time is providing information to new parents that reflect real stories. We want to help make that happen but we need your input.
Over the past couple years, we have gathered several stories from our community reflecting the diverse experiences of what it was like to find out your child has Down syndrome. We have received stories from families who were given a prenatal diagnosis and from families who learned of their child’s diagnosis after birth. We’ve used these stories in listening sessions with representatives of the United Sates Congress, and in Grand Rounds at OHSU.
It’s time to add to our collection. Will you share your story? The stories will be used in advocacy work around genetic testing. We hope to put a booklet together containing stories and photos so we can share your experiences with others as we work toward getting information to new families that represent our authentic and tangible experiences. To share your story, please e-mail Abby Braithwaite at abraithwaite@nwdsa.org or mail it to the office at PO Box 9127, Portland, OR 97207. Don’t let your comfort with the written word hold you back! If you want help getting your story down on paper, contact Abby and she will be glad to help.
KOIN 6 newscast at 8:55 minutes
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ATTENTION ALL FAMILIES AND CAREGIVERS
There are some very important budget and resource decisions being made in Salem that could have a significant impact on services for children and young people with disabilities.
Recognizing the important of this issue, the Northwest Down Syndrome Association (NWDSA) sent the attached letter to the State of Oregon highlighting the importance of funding for State and Federally mandated Early Intervention and Early Childhood Special Education (EI/ECSE) programs.
These services are very important to our children, and we urge you to take a moment to email (or phone or write) to your Senators and Representatives listed below.
It will only take a moment of your time, and every email or letter they get provides them with powerful evidence that parents need these services for their children.
Your email or letter can make a real difference at this crucial time, as Senators and Representatives must know that enough people care, in order for them to step out and support EI/ECSE. It won't be easy with the significant budget issues facing the State. But we can prevail if enough of us make our voices heard!
Please refer to the summary below and the attached letter from NWDSA for more information and guidance. Thank you for supporting EI/ECSE.
Sincerely,
NWDSA
EI Funding
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Please contact your legislators and members of Ways and Means leadership and members of the Ways and Means Education Subcommittee to urge them to increase the funding for EI /ECSE. The list of members to contact below. Talking points are below. It is critical to act NOW!
Support Additional Funding for
Early Intervention / Early Childhood Special Education
What is EI / ECSE?
o Federal and State mandated program
o Serves children birth to five with identified disabilities and their families
What is the issue?
o The current funding recommendation is only 66% of the funding needed to meet the actual cost of providing services.
o Between 2004- 2008 services were reduced 48% for children birth to 2.
o Between 2004- 2008 services were reduced 21% for children 3 to 5.
o The number of children with Autism Spectrum Disorder has increased dramatically and the amount of service available has declined. The current level of service is significantly below researched based service recommendations.
FUNDING FOR EI / ECSE MUST BE INCREASED AT LEAST $10m
Our children with disabilities and their families need your support!
Please send emails to the following individuals urging them to provide additional funding to EI / ECSE Program. Be certain to indicate topic in subject line. If you are a constituent indicate that in the subject line!!! Tell them why it is important to increase the funding even in these tough times.
Ways and Means Leadership:
Sen. Margaret Carter, Co-Chair Sen.margaretcarter@state.or.us
Rep. Peter Buckley, Co-Chair Rep.peterbuckley@state.or.us
Sen. Betsy Johnson, Vice-Chair Sen.betsyjohnson@state.or.us
Rep. Nancy Nathanson, Vice-Chair Rep.nancynathanson@state.or.us
Membership / Ways and Means Education Committee:
Sen. Rod Monroe, Co-Chair Sen.rodmonroe@state.or.us
Rep. Betty Komp, Co-Chair Rep.bettykomp@state.or.us
Sen. Richard Devlin Sen.richarddevlin@state.or.us
Sen. Fred Girod Sen.fredgirod@state.or.us
Rep. David Edwards Rep.davidedwards@state.or.us
Rep. Larry Galizio Rep.larrygalizio@state.or.us
Rep. Greg Smith Rep.gregsmith@state.or.us
Rep. Judy Stiegler Rep.judystiegler@state.or.us
Rep. Gene Whisnant Rep.genewhisnant@state.or.us
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We want to take a moment to thank you for your ongoing support of the Northwest Down Syndrome Association. Recently, we had the opportunity to travel as a board to Washington, DC to meet with other groups from across the country, and spend a day advocating on Capitol Hill.
The banners and the calendars from the All Born "In" awareness project played an important role in our advocacy work, and we were incredibly grateful to have such a strong resource to share. Please read on for a brief recap of our trip, and know that we couldn't have done it without your support and belief in us. Thank you!
Sometimes it is necessary to travel far from home to realize the riches that lie on your own doorstep.
The Board of Directors of the NWDSA just traveled to Washington, DC for a four-day conference with other Down syndrome parent groups from across the country. It was a good opportunity to learn about what other groups are doing, and share ideas and resources. We made some great connections while we were there, and came home with restored conviction that the work we are doing right here in Oregon is the most important work that we can be doing.
We joined with other conference attendees for a day on Capitol Hill, sharing our agenda with lawmakers. The day began with a Legislative Reception where we had the opportunity to hear from Congresswoman Cathy McMorris Rodgers of Spokane, WA, and Patrick Kennedy of Rhode Island, two founders of the Congressional Down Syndrome Caucus. The NWDSA’s All Born “In” banners helped to decorate the room, and illustrate the speeches that touched on inclusion, diversity and civil rights. We also shared the All Born “In” calendars with other conference attendees, asking that they present them as gifts on their legislative visits. Over 50 calendars were handed out on Capitol Hill that day. It is amazing to consider that our lawmakers have those hanging over their desks when they are making policy decisions that affect our families. We were very grateful to have the opportunity to share such a strong resource with others, and are glad that they are hanging on walls doing their good work.
It was very powerful to walk around in the halls of Congress sharing the stories of our families, and our hopes and dreams for our children. We met with the offices of Representatives David Wu of Oregon’s 1st District, and Brian Baird of Washington’s 3rd, as well as staffers from the offices of Washington Senators Maria Cantwell and Patty Murray. Jen Brandse and Steven Holland had the opportunity to meet directly with Senator Jeff Merkley as well, and other board members met with Cathy McMorris Rodgers. We were grateful for the time we had with these folks, and look forward to continuing to build relationships with their home offices.
Washington, DC is a very busy place right now, and we enjoyed the opportunity to steal a few minutes to talk about issues that concern us. High on our list was a request for funding to pay for the Kennedy-Brownback Prenatally and Postnatally Diagnosed Conditions Act. This bill passed easily last year, and requires medical professionals to offer parents the most complete and up-to-date information available about Down syndrome when handing out a diagnosis. This is an incredibly important issue for our community, particularly in light of increasing availability of prenatal testing. The original bill does not contain funding to put this into action, so one of our requests to legislators was to ask them to support funding of this bill so it can be fully implemented. For more information on this and other advocacy work on the federal level, please contact us or visit our website where we hope to post advocacy information soon.
While it was exciting and empowering to spend time in Washington, DC, we are grateful that the National Down Syndrome Society is committed to increasing the reach of its Policy Center, which will continue to advocate on behalf of all of our families. It was interesting and informative to talk with DC-based advocates about the work they are doing. DC is a very busy and complex place, and we came home with renewed faith that the work that we are doing to promote inclusion right here in our own community is just as important. More, it is the work we can do, the work we are doing, the work we do well.
We are more grateful than ever for the web of support that we have here in the Northwest for our work. It was your help and support that allowed us to go to DC, to carry our banners and calendars proudly with us, and it is your support that will help us make the 4th annual All Born “In” conference a day of empowerment and inspiration for area families and professionals committed to creating inclusive communities. It is your support that will help us reach out to all area families touched by Down syndrome and help get them off on a strong positive footing as they set out on this wonderful journey. And it is your help and support that will help us on our mission to change the world, as we work to create a community that is truly inclusive, and celebrates all its citizens.
To close, we come home humbled and empowered, and more committed than ever to continue with our work.
Thank you for your support.
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The Down Syndrome Community Celebrates an Important Victory
Congress Passes the Kennedy-Brownback Prenatally and Postnatally Diagnosed Conditions Awareness Act
New York, NY (September 26, 2008). After three years of advocacy, the U.S. Senate and the U.S. House of Representatives passed S. 1810, the Prenatally and Postnatally Diagnosis Conditions Awareness Act, during this last week before Congress adjourns . The legislation has been an extremely high priority for the National Down Syndrome Society (NDSS) and the National Down Syndrome Congress (NDSC). These organizations and individuals with Down syndrome and their families across the country are convinced there is a need for physicians and other health professionals to provide parents who receive a prenatal or postnatal diagnosis with updated, evidenced-based information about Down syndrome.
U.S. Senators Edward Kennedy (D-MA) and Sam Brownback (R-KS), original co-sponsors of the bill, came together to pass S. 1810. The bill passed the Senate by unanimous consent on September 23rd and passed the House by a voice vote on September 25th.
The Prenatally and Postnatally Diagnosed Conditions Awareness Act ensures that pregnant women receiving a positive prenatal test result and parents receiving a postnatal diagnosis will be more likely to receive up-to-date, scientific information about life expectancy, clinical course, intellectual and functional development, and prenatal and postnatal treatment options . It offers referrals to support services such as hotlines, Web sites, information clearinghouses, adoption registries, and parent support networks and programs specific to Down syndrome and other prenatally diagnosed conditions. The information that is all too often being provided in these situations is out-dated and inaccurate. The treatment options, functional development, opportunities and accomplishments of individuals with Down syndrome have improved dramatically over the years, yet decades old stereotypes still persist. It is critically important for healthcare professionals, families and society to update their knowledge and their perceptions about individuals with Down syndrome.
NDSS, NDSC and affiliate groups across the country, have worked for almost three years to bring the bill to passage. J. David Hoppe, NDSS Governmental Affairs Committee Chair, worked tirelessly with Members of Congress to ensure the bill would be considered despite competing time demands in Congress. “With one small eight-page statute we have the power to brighten the future for people with Down syndrome and their families, by breaking stereotypes and dispelling myths”, states Hoppe.
NDSC and NDSS and appreciate the hard work of the Members of Congress who championed the bill in the Senate and the House of Representatives—Senators Edward Kennedy and Sam Brownback, Congressmen James Sensenbrenner and Tim Ryan.
Other members of Congress who provided invaluable assistance and support- Senator Harry Reid, Speaker Nancy Pelosi, Majority Leader Steny Hoyer, Senator Mitch McConnell, Congressman James Clyburn, Minority Leader John Boehner, Congressman Roy Blunt, Congressman John Dingell, Congressman Joe Barton, Senator Jon Kyl, Congressman Pete Sessions and Congresswoman Cathy McMorris Rodgers.
NDSS and NDSC would like to thank the members of the Trisomy 18 Foundation and their leadership who were diligent and stalwart supporters in the effort to pass the bill.
NDSC and NDSS would also like to thank their affiliates and the thousands of individuals with Down syndrome, parents, families and friends who have worked tirelessly during the three-year effort to pass the legislation.
About NDSS
The National Down Syndrome Society is a nonprofit organization with more than 250 affiliates nationwide representing the more than 400,000 Americans who have this genetic condition. NDSS is committed to being the national leader in supporting and enhancing the quality of life, and realizing the potential of all people with Down syndrome. We demonstrate this commitment through our education, research and advocacy initiatives that benefit people with Down syndrome and their families. To learn more visit our new website www.ndss.org.
About NDSC
The National Down Syndrome Congress is America’s oldest national organization of individuals with Down syndrome, their families, friends and the professionals who work with them. NDSC works to promote equal rights and opportunities for individuals with Down syndrome through advocacy, information and education. The NDSC also hosts the world’s largest annual gathering of teens and adults with Down syndrome, as well as parents and professionals. For more information, please visit www.ndsccenter.org.
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Celebrities Participate in a National Public Service Announcement for the National Down Syndrome Society
September 24, 2008. (New York) Today Co-Anchor Meredith Vieira, Actor John C. McGinley, Baseball Star Albert Pujols of the St. Louis Cardinals, Access Hollywood Co-Host Nancy O’Dell, Self-Advocate and former Actor from the past TV series Life Goes On Chris Burke, as well as other self-advocates will participate in a public service announcement, highlighting October as Down Syndrome Awareness Month.
From September 26th- October 9th, Regal Entertainment Group will air the PSA in 6,700 screens across the country. The celebrities will speak about the abilities and achievements of all individuals with Down syndrome, in an effort to raise awareness for Down syndrome and the National Down Syndrome Society’s National Buddy Walk program. For a list of Regal Entertainment Group theater locations visit: http://www.regmovies.com
“I am honored to lend my voice to this important PSA as both a journalist and a mom. Having lived with challenges in my own family, I have learned that the greatest disability of all is misunderstanding and ignorance”, said Today Co-Anchor Meredith Vieira.
“The McGinley Family is thrilled to participate in this initiative with the National Down Syndrome Society! We are proud of every frame and delighted with the message it communicates: inclusion! Our hope is that public awareness announcements like this one will help to empower people with special needs and elevate the awareness of others who might treat and regard people with special needs with respect and dignity”, said Actor John C. McGinley.
There are more than 400,000 people in the United States who have Down syndrome, which is a genetic condition caused by a third copy of chromosome 21. The average life expectancy of an individual with Down syndrome has increased from 26 in 1983 to 60 today, partly due to recent medical advances. Every year more individuals with Down syndrome are going to college, working in various professions, living independently, getting married, and contributing back to society in many productive ways.
“For almost 30 years, the National Down Syndrome Society has worked to benefit people with Down syndrome and their families through national leadership in education, research and advocacy”, said Jon Colman, President of NDSS. “We are extremely grateful to the Regal Entertainment Group for their generous donation of air time, and we feel honored to have worked with such amazing and special talent”.
The National Down Syndrome Society is a nonprofit organization with more than 250 affiliates nationwide representing the more than 400,000 Americans who have this genetic condition. NDSS is committed to being the national leader in supporting and enhancing the quality of life, and realizing the potential of all people with Down syndrome. We demonstrate this commitment through our education, research and advocacy initiatives that benefit people with Down syndrome and their families. For more information visit www.ndss.org
Down Syndrome Facts
• Down syndrome occurs when, an individual has three, rather than two, copies of the 21st chromosome. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome.
• Down syndrome is the most commonly occurring chromosomal condition. One in every 733 babies is born with Down syndrome.
• There are more than 400,000 people living with Down syndrome in the United States.
• Down syndrome affects people of all races and economic levels.
• The incidence of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80 percent of children with Down syndrome are born to women under 35 years of age.
• People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer's disease, childhood leukemia, and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives.
• Life expectancy for people with Down syndrome has increased dramatically in recent decades - from 25 in 1983 to 60 today.
• People with Down syndrome attend school, work, participate in decisions that affect them, and contribute to society in many productive ways
• Quality educational programs, a stimulating home environment, good health care, and positive support from family, friends and the community enable people with Down syndrome to develop their full potential and lead fulfilling lives.
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Change it Anyway
Changing systems can be frustrating, confusing
and time consuming;
Strive to change them anyway.
If you speak out for change,
they may accuse you of being self-serving;
Speak out anyway.
If you make changes that work,
they may pretend to be an ally or persist with attacks;
Make change anyway.
If you make honest attempts at change,
they may undermine your efforts;
Attempt change anyway.
What you spend years developing,
they may undo overnight;
Develop it anyway.
If your innovations are successful,
they may be jealous;
Innovate anyway.
The progress you achieve today,
they may forget tomorrow;
Make progress anyway.
Create positive change the best that you can,
and it may never be enough;
Give it the best you've got anyway.
You see, in the final analysis,
it is between you and the person relying on the system;
It was never between you and them anyway.
This is dedicated to all those involved in changing human service systems to work better for people that rely on them for support. Adapted by Michael Steinbruck from The Paradoxical Commandments by Kent M. Keith and Do it Anyway by Mother Theresa.
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Kennedy-Brownback Bill Passed in the House
By now you have probably heard the news, but I just can’t stop saying it: The Kennedy-Brownback bill passed in both the US Senate and House this week! This bill will require medical professionals to give more complete and up-to-date information to families who receive a prenatal diagnosis of Down syndrome or other genetic anomalies. This is great news for groups across the country who have been working on the genetic testing issue for the past several years.
Thank you to everyone who responded to the alert to contact your congress people. You might consider a follow up call to find out how they voted, and thank them if they were among the supporters. They need to know we care, so they continue to support legislation that is good for our community.
The NWDSA has been working on the genetic testing issue for over two years now, and we are excited to move forward with the backing of the federal government. Now the important task of helping create the message for doctors lies in front of us. In keeping with our philosophy that parents are the experts, we intend to work hard to keep parents in the driving seat on this issue. Having the help of genetic counselors, research students and self-advocates has added to the depth of the presentations and impact we can have.
One important element of parent expertise is the sharing of our stories. We are the ones who have lived through our children’s diagnoses, and whether our experiences were positive or negative, our stories can help shape the experience of people coming after us. Several of you shared your stories with us when we went to Spokane to meet with Cathy McMorris Rodgers last month, and she left the listening sessions armed with a thick packet of the most personal and intimate moments in the lives of six or eight families. When she gave her testimony on the floor of the House of Representatives yesterday, she talked about the stories she has heard from parents across the country. I can’t help but think that our meeting, and the stories you shared, influenced her speech yesterday.
Oregon and Washington State are along way from DC, but we felt very close yesterday and also know that national staff from NDSS and NDSC along with many other DS groups and staffers helped “close the deal.”
Thank you for trusting us and sharing. We will be posting family stories here in the coming days, along with a transcript of the testimony Representative McMorris Rodgers gave on September 25th. If you would like us to consider posting your story, please send it to abraithwaite@nwdsa.org.
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Congresswoman Cathy McMorris Rodgers
Statement for the Record
S. 1810, the Prenatally and Postnatally Diagnosed Conditions Awareness Act
September 25, 2008
Madam Speaker, I rise today in strong support for S. 1810, the Prenatally and Postnatally Diagnosed Conditions Awareness Act. I believe this bill is a positive step forward in helping new and expecting parents of children with special needs get accurate information on the real potential of their children. This sort of information is critical at the time of diagnosis.
This legislation is very important to me because I am the proud mother of an amazing baby boy – Cole McMorris Rodgers. Two years ago, my life changed when I found out I was expecting my first child. It changed even more drastically when Cole was born a month early and was diagnosed with Down syndrome. Cole turned one year old at the end of April, and looking back on the last year, I can’t imagine my life without him.
Everywhere I go, I’ve met people who share their stories about a loved one who has special needs and they always share with me the positive impact that this person had in their life. It has helped me see a glimpse of the amazing impact my son is going to have on our lives and in this world.
Because of my personal experiences with my son Cole, I have made it my personal goal to increase awareness of the capabilities, value, and worth of people with disabilities. I am committed to helping families and individuals with disabilities have an opportunity to lead full, happy and productive lives.
Today, because of the advances in technology, we offer diagnosis for Down syndrome prenatally and soon we will be able to diagnose other genetic disorders and diseases prenatally. The question for every person in America is, “What are we going to do with this information and help parents when they receive the news of a diagnosis?”
The bill we are considering today will help parents who either receive the news that their child may be born with a disability, or their child has been diagnosed from birth up until twelve months of age, with current and reliable information about the many services and support networks available. This is a distressing and confusing time for parents of special children and it is so important for them to know that they are not alone, others have struggled with the same questions, and answers are available.
When new or expecting parents are told that their child will have a disability it is a very difficult and sometimes overwhelming experience. And yet, a study by Louis Harris and Associates found that medical professionals are more likely than any other group to underestimate the quality of life experienced by people with disabilities.
This situation is not due to a lack of will by the parent support groups and disability advocacy groups. These organizations have tried countless ways to reach out to parents who have received prenatal diagnoses of various conditions. Unfortunately, many geneticists and OB-GYNs believe that the parents of children with these conditions and the adults living with these conditions are biased.
Specifically, this bill provides for the establishment of a resource telephone hotline, a web site, and the expansion of the leading information clearinghouse on disability, so that it can more effectively provide parents with accurate, up-to-date information on their child’s condition along with available resources and services. S. 1810 also provides for the expansion and development of national and local parent support programs, so that they can more effectively reach out to new parents. In addition, this bill establishes a national registry of parents willing to adopt children with these disabilities. Finally, it establishes awareness and education programs for health care providers who give parents the results of these tests.
I applaud the work of Senators Brownback and Kennedy for their great work on this important bill. Their commitment to the disability community is commendable. I urge my collogues on both sides of the aisle to join me in support of passage of S. 1810, the Prenatally and Postnatally Diagnosed Conditions Awareness Act. I hope that this bill will provide these parents with the information and support they so desperately need during a critical time.
Thank you.
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Taking our Message to Washington
Listening Session with Representative McMorris Rodgers
By Abby Braithwaite
On August 18th, five NWDSA representatives joined U.S. Representative Cathy McMorris Rodgers of Eastern Washington for a conversation on prenatal testing. The NWDSA led a diverse group in a dynamic discussion of the medical, ethical and financial implications of prenatal testing for Down syndrome and other genetic conditions.
Congresswoman McMorris Rodgers and her husband Brian are the parents of 17-month-old Cole, who has Down syndrome. In May of 2008, Rep. McMorris Rodgers joined with three other members of Congress to form the bi-partisan Congressional Down Syndrome Caucus to bring attention to issues affecting individuals with Down syndrome and their families.
The NWDSA’s relationship with the Congresswoman began when Jamie Burch sent her a New Parent Guide just after her son was born. When the All Born “In” photo gallery was in Olympia in March, I met Jamie Herrera, my representative in the Washington State House of Representatives, who is a former aide for Rep. McMorris Rodgers. Rep. Herrera offered to help connect us with the office of the Congresswoman. After phone and e-mail correspondence with staff in Washington, D.C., Angela Jarvis-Holland met with Rep. McMorris Rodger to discuss a variety of issues, including genetic testing. The Congresswoman expressed interest in learning more, and so the August listening session was arranged.
The meeting was a chance for Rep. McMorris Rodgers and her staff to hear directly from parents and professionals about genetic testing and its implications for our community. Cori Feist, a genetic counselor at OHSU, spoke about the history of genetic testing, the current use, and where testing may go in the future. Father Robert Spitzer, President of Gonzaga University in Spokane, discussed how ethical concerns around genetic testing might affect both public policy matters and decisions made by individual families. Two years ago the NWDSA commissioned a study from PSU graduate student Abi Coatney about the attitudes around prenatal diagnosis in the medical arena. Everyone who attended the listening session went home with a copy of this thought-provoking study.
As with all of the work of the NWDSA, the parents and self-advocates sat firmly
“in the driver’s seat” for this meeting. This value is at the core of all that the NWDSA does; we believe the most effective advocacy is achieved through partnerships between empowered parents and enlightened professionals working within a best practices framework.
In preparation for the meeting, we asked community members to share the story of their child’s diagnosis. We presented each participant with a packet of these stories, so they could go home and read first-hand accounts from the true experts, the parents who have lived through the experiences we discussed. As usual, community advocate Eleanor Bailey stole the show with her Power Point presentation about living with Down syndrome.
Whether we are parents sharing our stories with friends or in the media, self advocates promoting awareness at school or in the community, or a Congresswoman on the national stage, we are all in a position to work for positive change, and should not underestimate the power of our own stories. In the face of alarming statistics around pre-natal testing and abortion rates, it is important that each of us takes a minute to think about what we can do to promote Down syndrome awareness. Everyday advocacy is where change begins. If you are interested in joining with the NWDSA for this exciting and important work, please contact Angela Jarvis-Holland at 503-238-0522 or ajarvisholland@nwdsa.org.
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Photo Gallery Tour 2008
Expanding Our Community
By Abby Braithwaite
The All Born “In” photo gallery has had quite a tour around the area since the January debut at OHSU. The banners have spent three days at the Legislative Building in Olympia, WA, working to build awareness around some important bills in their winter legislative session. The images also made a trip to the capitol in Salem to kick off the Developmental Disability Awareness Month activities. They spent a day at Lloyd Center at a Multnomah County event promoting child and family health, and they have appeared at multiple conferences around the area. At our All Born “In” conference in April they helped set the tone for the more than 200 conference attendees, and over the weekend of May 29th they traveled to Bend for the state-wide developmental disabilities Mega-Conference. We have more plans in store for them, and we are in the process of expanding the gallery with another five or six banners. We are also starting to pull the funding and sponsorship together to put out a 2009 All Born “In” calendar using these gorgeous images.
The photo project provided us with a chance to meet many new people, and is an excellent example of how we can bring the larger community into our work. The project started several years ago, when parent Tacee Webb approached us with the idea of making a calendar. Tacee introduced us to photographer Jodi Collins, of Urban Photography. Jodi generously donated her time and artistry to the original DS Now calendar of 2005, and was eager to work with us again in the spring of 2007, when we began shooting for the ABI exhibit. In December of 2007 we met graphic designer Alex Harris, who in turn introduced us to Bryan Dalton. These two young graphic designers dedicated an incredible amount of time and energy to turn Jodi’s beautiful photos into the larger-than-life banners that make up our awareness photo gallery.
When Jodi became a mom of two beautiful little babies in January of this year (congrats, Jodi!) we decided to give her a bit of a break, and were connected with Joshua Dommermuth of Quixotic Images, and he, together with graphic designer Giuseppe Lipari, is helping us expand our gallery with more images.
Additionally, the connections we made with project sponsors illustrate the expansion of our community. The project started with a seed grant from
Hanna Andersson, which was matched by OHSU, TigerStop, and the MESD.
Without the trust and generosity of these businesses and organizations, we never could have gotten off the ground.
As the banners travel around Oregon and Washington, they serve as a powerful introduction to our group and the work that we do to promote greater awareness of the value of all individuals. Our community continues to grow as more people have the opportunity to view the photo gallery. And now, as you read in the Letter From the Board, we are receiving some exciting recognition from some area agencies for the work.
We are also beginning work on a 2009 calendar, featuring the beautiful images from the photo gallery. It is our hope that we can raise enough money through sponsorship to produce the calendar. Through the calendar sales we will both raise money for next year’s conference, and continue to grow the reach of these images, allowing them to influence and inspire an ever-broadening audience.
It is very exciting to be moving forward with this exciting awareness work, and to be recognized for our efforts, but without the help and support of our entire and ever-expanding community, the photo exhibit could not have happened. So, from all of the Board of the NWDSA, and all of our families, we send a heartfelt thank you to those who helped us with this exciting work. Thank you for joining our community.