The Northwest Down Syndrome Association (NWDSA) is pleased to announce that Angela Jarvis-Holland has been appointed Executive Director, effective September 1, 2008. Ms. Jarvis-Holland has served on the Board of Directors of the NWDSA since 2002, and has been a driving force behind a variety of innovative projects. She most recently served as the Chair of Education and Advocacy.Ms. Jarvis-Holland brings to her new role as Executive Director many years of experience in leadership roles within the social services community. In her native England, Ms. Jarvis-Holland worked for several years as a public health nurse and community educator, and directed programs working with at-risk teens. After moving to the United States in 1992, she worked in social services for a number of years, including at the Parry Center and later at the Kelly Community House, where she directed a literacy based school and family support project.

In addition to her leadership experience, Ms. Jarvis-Holland holds several degrees, including a nursing degree, a double major in sociology and psychology, and a vocational master’s degree in youth and community studies and non-profit management. She has established an extensive network in the disability and healthcare community around the Northwest, and completed the Oregon Partners in Policy Making training in 2004.

While with the NWDSA, Ms. Jarvis-Holland developed the Reciprocal Learning Community, a parent-professional education project, and co-founded the All Born “In” inclusion conference. Ms. Jarvis-Holland lives in Southeast Portland with her husband and their two sons, Quinn, 14 and Daniel, 9. She has said that her two sons, and the desire to give them equal opportunities to live a rich, full life, have provided her with the inspiration to dedicate herself to advocacy work. As the NWDSA continues to grow and expand, it is exciting to be able to offer this position to such a highly qualified individual who has a proven track record as an advocate for all children and families.

NWDSA Board of Directors

We recently held a listening session with U.S. Congresswoman Cathy McMorris Rodgers from Spokane, where we presented parent stories, a literature review that we commissioned from a PSU student investigating attitudes in the medical community around genetic testing, and a powerful presentation by a genetic counselor at OHSU. We also had a self-advocate speak about her life and experiences as a young person with Down syndrome.

We have strong links in the local medical community, and we have a draft proposal under consideration at OHSU and Providence to do training session around these issues. We are a credible, local organization who values our ties with the broader community, and we have done a lot of thinking about the issues that are on the airwaves these days. It is inevitable in circumstances like this that misinformation circulates, especially on internet forums. We rely on the local media for strong, unbiased reporting on the issues, and hope that we can become a resource to tackle these complicated ideas.

Down syndrome does not discriminate in the lives it touches, so all these issues are propelled into the non-partisan arena. People of all political persuasions are faced with these decisions every day, and as a group we aim to be neutral and non-partisan in our positions.

Thank you for your time,
The NWDSA Board of Directors.

“The only thing that interferes with my learning is my education.” – Albert Einstein

For others recent perspectives on this issue follow the links below:

• http://www.patriciaebauer.com/category/down-syndrome/
• http://www.cbsnews.com/stories/2008/09/10/eveningnews/main4437797.shtml
• http://bbandbohmy.blogspot.com/2008/09/katie-couric-on-down-syndrome-i-demand.html

Although it is a storefront location, it really will serve as a home base, and not as an “office or clinic”. It will not have the look and feel of a boring, drab, colorless office. Instead it will have bright colors, lively decorations, pictures of our kids, a space for children to play, storage for our large collection of resources, and an area to conduct meetings. We are a parent driven organization, and we see it first and foremost as a support center for our work.

We are excited by this opportunity to centralize our efforts, and we appreciate the help of our community and especially our business friends, who have made this move a reality. A big thank-you to Charles McCleod, owner of the business next door, PC Paramedix, who is sub-letting the space to us at a discount rate. Many thanks also to NWDSA Board members, Christy Reese, Angela Jarvis-Holland, Jen Brandse, and Jamie Burch for their work in cleaning, painting, decorating, and for sourcing the furnishings.

On July 21st, we had an open house and celebration for our families and friends. We met some new families and “christened” our new home. The star guest was a 9 day old baby with Down syndrome who captured the hearts of everyone there. In the fall we will have a more formal open house and will invite other groups and agencies to visit with us.

• Our 8th Buddy Walk;
• The first “All Born In” Inclusion Conference;
• Reciprocal Learning Community sessions;
• Open Arms Play Group second year;
• Club Upside;
• Advocacy work in parent education and genetic testing;
• Social events;
• Second edition of the New Parent Guide;
• Hispanic outreach and translation;
• Mini-grants for parent projects; and
• The updated NWDSA.org website.

But there are many things that remain to be done. In fact many serious challenges confront our community, including the ongoing battle to keep our children fully included in elementary, middle school, and high school, the lack of support for our teens and young adults with respect to receiving adequate training and educational opportunities, and the ongoing issue of unemployment and under employment for adults in our community. In addition, early prenatal testing for Down syndrome is moving faster than the ability of our medical community to present accurate, timely, and hopeful information for new parents. These are important challenges, and we need to collectively work together to address these issues in our local community.

A hopeful sign however, is the continuing support and growth we are experiencing. We are very pleased to announce another addition to the NWDSA Board of Directors. Christy Reese has joined the Board effective October 22, 2006. Christy and her husband Ken are the proud and loving parents of Dennis, their 2 1/2 year old beautiful son, who has Trisomy 21. Christy has worked for a number of years in the banking industry before having Dennis, and now she is at home with him. Christy and her family attend East Hill Church, spend time working on their house, and enjoy doing things together as a family. Christy and Ken are committed to having Dennis fully included in all aspects of life. Many of you already know Christy and Ken, or have recently met them through their extensive help with the 2005 and 2006 Buddy Walks. Please join me in welcoming Christy to the Board!

With this last letter of the year, I also wanted to take the opportunity to share with you some perspective on our group. We often our asked what our group is about – just what is the NWDSA? First of all, I must tell you what we are not. I know I speak for all of us who work on and with the NWDSA when I say we are not a social service agency, and we are not a service provider, or a clinic. What we are is a passionate group of dedicated parents who want to make a difference in the lives of our children, and we want to learn how to assist teens and adults with Down syndrome. Our goal is to help everyone live rich and satisfying lives, and we believe we can accomplish this by taking action, by challenging stereotypes, and by breaking down the artificial limits placed on people with Down syndrome. We are entrepreneurial in the sense of taking risks, and looking for avenues to push the envelope. But we do this in a sensitive and caring way, and we recognize differences of opinion, and also the role that professionals play in helping us in the journey.

The journey we call 2006 is almost at an end — and a new year awaits us. The year 2007 will bring with it some surprises, some victories, maybe even some defeats, but above all, I hope it presents us with opportunities to make a difference, with a chance to “rock our world,” and I hope we rise to the occasion.

We hope to see you all at the December social!

Take care,
Steven Holland
President