Comments on: Down syndrome advocates lobby on Capitol Hill

By: Eileen

Eileen — Thu, 14 May 2009 04:26:50 +0000

Thank you for reporting on this, Pat. Is there someone I can contact to be notified of these events? Would it be the CDSC? (Rep. McMorris?) Thanks.

By: Sabrina Baker

Sabrina Baker — Sun, 08 Mar 2009 21:23:57 +0000

I attended the AIA day on the Hill representing the Friends group of Upper East TN. We had a meeting with Congressman Roe. He was very generous with his time and agreed to join the Congressional Down syndrome Caucus. Since he is a former OB/GYN he had a unique perspective.

We had meetings with Corker and Alexander’s staff. They were polite and listened to us but of course could not make any commitments.

I left knowing quite a bit more about the political process as well as feeling that we had made some sort of impact that day since there were so many of us. I would love to see this happen every year in Washington D.C. I believe it would make a great impact for individuals with Down syndrome.

By: Christina Stummer

Christina Stummer — Fri, 06 Mar 2009 17:37:57 +0000

I am translating your story into Portuguese for Agencia Inclusive. My work would be easier if I had the text without the photos, though they look great. Could you please email it to me?
Thank you and congratulations for your enthusiastic advocacy.

By: Sandy Coleman

Sandy Coleman — Fri, 06 Mar 2009 04:37:03 +0000

This was a historical day in the awareness and rights movement for Down Syndrome.

I attended representing families of Martin and St Lucie Counties in Florida. It was a wonderful chance to meet and unite with leaders for all over the U.S. with a common goal.

Thanks to ALL, especially Amy of Kansas City. This is what it’s all about. I know things are going to happen now and I am committed to do what I can. I am anxious to share all that I learned with families and to encourage them to meet and get to know our local Representatives.

By: Terri Leyton

Terri Leyton — Thu, 05 Mar 2009 18:32:10 +0000

It was an amazing event. My group visited with four North Carolina delegates and we came away with a victory. Senator Richard Burr (R-NC) has signed on as a co-sponsor of the ABLE Act. That is a gratifying feeling! Thanks to all who advocated on behalf of people with Down syndrome.

By: Jawanda Mast

Jawanda Mast — Thu, 05 Mar 2009 15:29:51 +0000

I also wanted to comment on the opportunity to meet Rep. Roe from East TN. He is an ob-gyn and came to our Legislative Breakfast on Thurs.

I was able to meet him and learn that he was friends with my own personal ob-gyn who lives in another part of the state. We were able to introduce him to his constituents who are responsible for one the DS support groups in his area. I believe he also agreed to join the Down Syndrome Caucus.

I now live in Kansas City and it was very meaningful to me to get to meet several of the staffers in our political offices. The most fun, was getting to actually spend time with Senator Brownback who has done so much for the Down syndrome community.

I will say it again! What a day!

By: Jacqui Hawkins

Jacqui Hawkins — Thu, 05 Mar 2009 03:10:25 +0000

I was unable to attend this year, but being a part of last year’s event, I know this is an extremely dedicated group to raise awareness about Down Syndrome and I enjoyed reading all about how awesome I knew it would be! Thanks!

By: Amy Allison

Amy Allison — Thu, 05 Mar 2009 02:18:46 +0000

Thank you for your fantastic coverage of the DS Affiliates in Action Advocacy Day on the Hill.

One of our asks on the Hill was for members to join the Congressional Down Syndrome Caucus (CDSC). When we reconvened on Friday morning we asked AIA attendees to indicate if their member agreed to join and by show of hands it appears we may have 15-20 more members of the CDSC due to our strong efforts on the Hill.

An estimated 175-200 meetings were held with legislators. This is a wonderful start to what should become an annual tradition of Down syndrome affiliate leaders going to Washington DC to advance legislative priorities which will improve the lives of people with Down syndrome.

KUDOS to every organization who sent leaders to the Hill. Our voice can and will be heard if we continue to work together!

(Editor’s note: And kudos to Amy for organizing the event! That’s Amy in the fourth photo down from the top, standing with Rep. Cathy McMorris Rodgers (R-WA), co-chair of the Congressional Down Syndrome Caucus.)

By: Amy Van Bergen

Amy Van Bergen — Thu, 05 Mar 2009 01:50:34 +0000

I was there with another parent from our Orlando-area group and we partnered with our fellow Floridians — from the Panhandle, Jacksonville, Fun Coast and Gold Coast areas — to see all of our representatives and both Senators’ staff.

We had a particularly warm welcome from Rep. Crenshaw (Jacksonville) who sponsored the tax-free accounts bill, referred to now as ABLE. His chief of staff even told us that after he dropped the bill, Rep. Crenshaw waited to receive the bill number … his Chief indicated that he had NEVER known any representative to do that in his 15+ years on the Hill. I believe he did so because he knew there were 300 of us waiting to share the news!

We left AIA and our Day on the Hill feeling like together, we can accomplish ANYTHING!

By: Nancy Iannone

Nancy Iannone — Wed, 04 Mar 2009 22:53:25 +0000

I could not go — but thank you Pat for the very informative report!