Our team in Washington.jpg)
The "Washington" look:)
Kris, Judy, Laura, Paula
We arrived home safely on Friday, Oct. 9th after a three day visit to Washington DC . The purpose of our trip was to obtain co-sponsorship for two bills that will fund research and raise awareness of the disease Scleroderma. We traveled with Laura Dyas, the Executive Director of the Michigan Chapter of the Scleroderma Foundation, along with over 45 other people from various states.
Our schedule was very busy. On Wednesday we met with the staff members from several Senator's offices and on Thursday we met with staff members from Congressional offices. Each meeting was 15-20 minutes long and the agenda was to tell our personal stories about scleroderma and talk about the bill itself. I was shocked at how many staffers had never heard of scleroderma nor had seen someone with the disease. I shook everyone's hand that I met....and in some cases...the staff member even felt the hard skin on my arms.
The most emotional moment for me and the team was with was when Congressmen Mark Schauer from Jackson personally attended our meeting pledging his commitment to co-sponsor the bill....right then and there!!!! He was a very gracious man....with a big heart for people!!!
We all sat there with tear-filled eyes as he shared his concern!!
He joins the following Congressmen from Michigan in co-sponsorship:
H.R. 2408...there are many others from other states...but I have only listed Michigan.
Rep. Vernon Ehlers (Mi) Sponsor of the bill (Mi-3)
Rep. Carolyn Kilpatrick (Mi-13)
Rep. Gary C. Peters (Mi-9)
Rep. Fred Upton (Mi -6)
Rep. Dave Camp (Mi-4)
Rep. John Conyers (Mi-14)
Rep. Peter Hoekstra (Mi-2)
Rep. Dale Kildee (Mi-5)
Rep. Candice Miller (Mi-10)
Rep. Thaddeus McCotter (Mi-11)
Senators co-sponsoring S. 1545
Debbie Stabeonow (yes)
Carl Levin (gave us a meeting)
Bart Stupak (would not give us a meeting)
I believe after the trip we were up to 59 congressional co-sponsors and 4 senate. I have only listed those from Michigan. This is not a partisan bill and it has gained support from both sides of the aisle. The bill S. 1545 was introduced by Senator Kirsten Gillibrand of New York and the bill H.R. 2408 was sponsored by Rep. Lois Capps of California.
I am very disappointed by the offices of Carl Levin and Bart Stupak for refusal to sign on to co-sponsorship. If you have any pull in any of those offices....I will get back to you with a way that you can help!
While we in Washington we had the joy of meeting up with Ken's first cousin Rebecca Yount. We went to dinner with Becky and Darryl the first night we were in town and had a wonderful visit! The next two days were spent in meetings.....and for me mostly in a wheel chair being pushed by Ken so we could get to meetings quick and ON TIME!!! There was so much walking....I would have never been able to walk the distances required of us!
On the interesting side....I watch alot of FOX News so I am quite familiar with politician's faces.....so when Ken was wheeling me down a corridor on Capitol Hill....I turned to a gentlemen and said "Hello Mr. Frank!"....at which point "Barney" turned and said "Hello". When we stopped for lunch in the congressional cafeteria and I stopped and shook hands with another gentlemen, introducing myself and talking briefly about our purpose in DC and the Scleroderma Research and Awareness Act.....and Mr. Dennis Kuscinich responded..."I am aware of that bill....I support it....and someone on my staff has that disease".
We met so many precious people on that trip who were rallying for support......and we made several new friends. Personally I have not met too many people that share my disease....so it was very special to me to connect with them. Suddenly I didn't feel so alone with my "curved fingers....tight skin and hands!" Everyone's story is different...and they have the disease in many varying degrees. I know I will stay in contact with these "courageous" friends...and I will plan on attending the National Scleroderma Foundation Annual Conference next year in Boston. My hope is that my sister Linda will be able to go with me....as it is a tremendous and informative Conference with so much to learn! Linda is very keen when it comes to medical issues and I know together we could benefit from the conference.
I am so thankful that Ken could take vacation days to go with me, that Jason and Emily moved into our house with the "4" children to take care of Joel, and that we had the prayers and well wishes from so many friends and family! We are so blessed to know that we have you all to count on!!
Thank you for your support...
God gave us a safe journey to and from Washington...and I know He will continue to watch over us....direct our days...and show us ways we can continue to serve Him...even in the midst of trials!
Our schedule was very busy. On Wednesday we met with the staff members from several Senator's offices and on Thursday we met with staff members from Congressional offices. Each meeting was 15-20 minutes long and the agenda was to tell our personal stories about scleroderma and talk about the bill itself. I was shocked at how many staffers had never heard of scleroderma nor had seen someone with the disease. I shook everyone's hand that I met....and in some cases...the staff member even felt the hard skin on my arms.
The most emotional moment for me and the team was with was when Congressmen Mark Schauer from Jackson personally attended our meeting pledging his commitment to co-sponsor the bill....right then and there!!!! He was a very gracious man....with a big heart for people!!!
We all sat there with tear-filled eyes as he shared his concern!!
He joins the following Congressmen from Michigan in co-sponsorship:
H.R. 2408...there are many others from other states...but I have only listed Michigan.
Rep. Vernon Ehlers (Mi) Sponsor of the bill (Mi-3)
Rep. Carolyn Kilpatrick (Mi-13)
Rep. Gary C. Peters (Mi-9)
Rep. Fred Upton (Mi -6)
Rep. Dave Camp (Mi-4)
Rep. John Conyers (Mi-14)
Rep. Peter Hoekstra (Mi-2)
Rep. Dale Kildee (Mi-5)
Rep. Candice Miller (Mi-10)
Rep. Thaddeus McCotter (Mi-11)
Senators co-sponsoring S. 1545
Debbie Stabeonow (yes)
Carl Levin (gave us a meeting)
Bart Stupak (would not give us a meeting)
I believe after the trip we were up to 59 congressional co-sponsors and 4 senate. I have only listed those from Michigan. This is not a partisan bill and it has gained support from both sides of the aisle. The bill S. 1545 was introduced by Senator Kirsten Gillibrand of New York and the bill H.R. 2408 was sponsored by Rep. Lois Capps of California.
I am very disappointed by the offices of Carl Levin and Bart Stupak for refusal to sign on to co-sponsorship. If you have any pull in any of those offices....I will get back to you with a way that you can help!
While we in Washington we had the joy of meeting up with Ken's first cousin Rebecca Yount. We went to dinner with Becky and Darryl the first night we were in town and had a wonderful visit! The next two days were spent in meetings.....and for me mostly in a wheel chair being pushed by Ken so we could get to meetings quick and ON TIME!!! There was so much walking....I would have never been able to walk the distances required of us!
On the interesting side....I watch alot of FOX News so I am quite familiar with politician's faces.....so when Ken was wheeling me down a corridor on Capitol Hill....I turned to a gentlemen and said "Hello Mr. Frank!"....at which point "Barney" turned and said "Hello". When we stopped for lunch in the congressional cafeteria and I stopped and shook hands with another gentlemen, introducing myself and talking briefly about our purpose in DC and the Scleroderma Research and Awareness Act.....and Mr. Dennis Kuscinich responded..."I am aware of that bill....I support it....and someone on my staff has that disease".
We met so many precious people on that trip who were rallying for support......and we made several new friends. Personally I have not met too many people that share my disease....so it was very special to me to connect with them. Suddenly I didn't feel so alone with my "curved fingers....tight skin and hands!" Everyone's story is different...and they have the disease in many varying degrees. I know I will stay in contact with these "courageous" friends...and I will plan on attending the National Scleroderma Foundation Annual Conference next year in Boston. My hope is that my sister Linda will be able to go with me....as it is a tremendous and informative Conference with so much to learn! Linda is very keen when it comes to medical issues and I know together we could benefit from the conference.
I am so thankful that Ken could take vacation days to go with me, that Jason and Emily moved into our house with the "4" children to take care of Joel, and that we had the prayers and well wishes from so many friends and family! We are so blessed to know that we have you all to count on!!
Thank you for your support...
God gave us a safe journey to and from Washington...and I know He will continue to watch over us....direct our days...and show us ways we can continue to serve Him...even in the midst of trials!
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3 comments:
Very inspiration post, I stumbled upon your post through google alert which I have set up for the word scleroderma. I Suffer from diffuse systematic scleroderma for 3 years now. I live in Hawaii and travel to boston to see my specialists every 6 months.
I'm wondering if you know the dates for the National Scleroderma Foundation Annual Conference next year in Boston? I tried to google the information but cannot find any dates?
I thinking of making the trip out for it, if its not the middle of winter time!
Sincerely
Katie
You can check out my blog www.katieanna.typepad.com
Katie,
So good to hear from you!! I'm glad you stumb;ed upon my blog. I believe the dates are July 16,17,and 18th. I am really hoping to go. The Washington trip was very interesting! If you have the time to write/call/email your senators in Hawaii...you could ask if the have co-sponsored the Scleroderma Awareness Bill C 1595, and for Congressional leaders the number is H.R. 2408. These are two VERY IMPORTANT bills that will increase funding to provide more resarch and raise awareness of this complicated disease we have.
If there is any other way I am able to help....please let me know. I would love to hear your story...and I will also visit your blog! Take care...hope to hear from you again:) Judy
Judy and Ken,
We are excited about your new challenge to inform others about scleroderma and seek federal funding for research! Thanks for sharing about your trip. We were praying for you. You go, girl!
Anne
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