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Beth’s Last Day at the Advocacy Summit
As we were told by the experts, once you have the first meeting under your belt, legislative meetings become more fun.  This was true for me.
Our day was one of saying thanks as we met with Rep. Mike Doyle who is co-sponsoring HR 460 and HR 1827 as well as staff from Rep. Tim Murphy’s office who is co-sponsoring HR 460.  This was followed by a windy walk to the White House.
The Advocacy Summit was an experience like no other and for those who haven’t yet been I recommend it.  I found the experience exhilarating and the Congressional office filled with passionate, dedicated people.
The best part of the summit was sitting in legislative meetings and watching lawmakers and their staff raise their eyebrows in disbelief as the learned something new – the number of children with arthritis, the cost of the medication that keeps people healthy or the impact when they can no longer afford to take their medication.
I hope that I am able to attend future Advocacy Summits so I can continue to bear witness to change even if it is one person at a time.

Beth’s Last Day at the Advocacy Summit

As we were told by the experts, once you have the first meeting under your belt, legislative meetings become more fun.  This was true for me.

Our day was one of saying thanks as we met with Rep. Mike Doyle who is co-sponsoring HR 460 and HR 1827 as well as staff from Rep. Tim Murphy’s office who is co-sponsoring HR 460.  This was followed by a windy walk to the White House.

The Advocacy Summit was an experience like no other and for those who haven’t yet been I recommend it.  I found the experience exhilarating and the Congressional office filled with passionate, dedicated people.

The best part of the summit was sitting in legislative meetings and watching lawmakers and their staff raise their eyebrows in disbelief as the learned something new – the number of children with arthritis, the cost of the medication that keeps people healthy or the impact when they can no longer afford to take their medication.

I hope that I am able to attend future Advocacy Summits so I can continue to bear witness to change even if it is one person at a time.

Carol’s Busy Wednesday


Wow! What a day! 


We started this morning attending “Buckeye Coffee” at the offices of Sen. Rob Portman, where we received the gift of quality time with members of Mr. Portman’s staff and from the Senator himself.  Quite a photo op that included Amy, Kelly, John, Laura, me, and of course advocate without compare, Anna.  Senator Portman gave Anna a souvenir coin reserved for only very special visitors like Navy SEALs…and girls with JA like her!


Next on the list was Rep. Tim Ryan, who gave very generously of his time despite needing to run to “the floor” for a vote.  Anna and Laura distinguished themselves in giving a face to arthritis and describing what we were there to ask for.  We thanked Congressman Ryan for his co-sponsorship of HR 460.  AND, Anna and Laura left with flags and plastic gizmos made by 3D printers in Youngstown.  Really cool stuff!!


Last on the agenda was a visit to David Joyce’s office.  Unfortunately, Mr. Joyce was pulled into a very important meeting so we didn’t get a chance to meet him, but his HLA gave us lots of his time and attention.  Once again, Anna and Laura did us proud.  Unfortunately, I had to run out to get to the airport before everyone else, but that will give me a great excuse to call back in a few weeks to check in.


At the airport now and getting ready to head home, tired but happy!

 

 

 

Carol’s Busy Wednesday

Wow! What a day! 

We started this morning attending “Buckeye Coffee” at the offices of Sen. Rob Portman, where we received the gift of quality time with members of Mr. Portman’s staff and from the Senator himself.  Quite a photo op that included Amy, Kelly, John, Laura, me, and of course advocate without compare, Anna.  Senator Portman gave Anna a souvenir coin reserved for only very special visitors like Navy SEALs…and girls with JA like her!

Next on the list was Rep. Tim Ryan, who gave very generously of his time despite needing to run to “the floor” for a vote.  Anna and Laura distinguished themselves in giving a face to arthritis and describing what we were there to ask for.  We thanked Congressman Ryan for his co-sponsorship of HR 460.  AND, Anna and Laura left with flags and plastic gizmos made by 3D printers in Youngstown.  Really cool stuff!!

Last on the agenda was a visit to David Joyce’s office.  Unfortunately, Mr. Joyce was pulled into a very important meeting so we didn’t get a chance to meet him, but his HLA gave us lots of his time and attention.  Once again, Anna and Laura did us proud.  Unfortunately, I had to run out to get to the airport before everyone else, but that will give me a great excuse to call back in a few weeks to check in.

At the airport now and getting ready to head home, tired but happy!

 

 

 

Day 2 from Beth Brown:
We packed a lot into one day – so I’m only going to hit the highlights.
Our job today was to talk to Senator Pat Toomey’s office about our three issues – H.R. 460, H.R. 1827 and ensuring post-traumatic OA and RA research dollars at the Department of Defense.
As we prepared for our meeting, we sat around the table and everyone shared their personal story that brought them to this point.  With these stories we developed our strategy and how we wanted to deliver our message. 
Once we did that, we had hours to wait until our meeting — hours for me to become more nervous. I calmed myself by reminding myself of the stories and the burden that arthritis has on families. Finally, it was meeting time and everyone shared their stories, tied them back to our priority issues, and upon reflection, I think we changed a mind and left a positive impression.
I am excited for tomorrow.  Now that the first meeting is over, I’m confident that tomorrow will be more fun than nerve wracking.

 

Day 2 from Beth Brown:

We packed a lot into one day – so I’m only going to hit the highlights.

Our job today was to talk to Senator Pat Toomey’s office about our three issues – H.R. 460, H.R. 1827 and ensuring post-traumatic OA and RA research dollars at the Department of Defense.

As we prepared for our meeting, we sat around the table and everyone shared their personal story that brought them to this point.  With these stories we developed our strategy and how we wanted to deliver our message. 

Once we did that, we had hours to wait until our meeting — hours for me to become more nervous. I calmed myself by reminding myself of the stories and the burden that arthritis has on families. Finally, it was meeting time and everyone shared their stories, tied them back to our priority issues, and upon reflection, I think we changed a mind and left a positive impression.

I am excited for tomorrow.  Now that the first meeting is over, I’m confident that tomorrow will be more fun than nerve wracking.

 

Day Two of the Advocacy Summit

Wow, day two was exhausting! I obviously don’t get out of Ohio much, because we played with the touch screen vending machine in the Senate cafeteria today.
When we finally got upstairs, we didn’t get to have our meeting in an actual meeting room. I got to meet with one of Senator Brown’s staff members. She was amazing.
Their biggest fear is that the way the PATA bill is written now, insurances will just knock the biologics down a tier and they will still be extremely expensive. The new bill they are working on will prevent insurances from keeping biologics in a separate tier.
I feel like they are actually listening to what we have to say! At dinner, I got the chance to speak to everyone. After dinner was over, I had the sweetest little girl come up to talk to me. Her mom really wanted her to meet me. It was the greatest feeling in the world knowing that some of these kids look up to me. I can’t even put in to words how humbling this has all been. Long night and early morning tomorrow! Can’t wait to speak tomorrow!
Rylee’s First Day on the Hill
Today during the advocacy training session, I learned about how to talk to someone about arthritis issues I care about.  I learned about different bills.  My favorite part was talking to the senators and telling them my story.
One of the advocacy issues was the bill H.R. 460 which is the bill that deals with the specialty tier drugs. This bill affects me personally because I am prescribed a specialty tier drug.  If this bill is passed, it will ensure I can continue my treatment.
Tomorrow, I am looking forward to talking to the representatives about the bills that they need to sign or thanking them for signing the bills.

Rylee’s First Day on the Hill

Today during the advocacy training session, I learned about how to talk to someone about arthritis issues I care about.  I learned about different bills.  My favorite part was talking to the senators and telling them my story.

One of the advocacy issues was the bill H.R. 460 which is the bill that deals with the specialty tier drugs. This bill affects me personally because I am prescribed a specialty tier drug.  If this bill is passed, it will ensure I can continue my treatment.

Tomorrow, I am looking forward to talking to the representatives about the bills that they need to sign or thanking them for signing the bills.

Carol’s Second Day at the Advocacy SummitReflecting on the day’s events while waiting for dinner.  Today, after another excellent kickoff by Christopher Cush, we visited our Senators’ offices.Because we had such a large group from Ohio and our appointments were only 1/2 hour apart, we split into two groups.  I was with the group visiting Sherrod Brown.  We met with his legislative assistant who expressed support for what we are asking in support of those of us with arthritis: Patients Access to Treatment, loan repayment forgiveness for pediatric rheumatologists, and inclusion of osteoarthritis and rheumatoid arthritis in Department of Defense funding.Katherine Hermann, Taylor Guerrant, and Laura Kichler did an incredible job in telling their stories and making the asks. I am very impressed with their poise and a maturity well beyond their years.When the group that met with Rob Portman joined us, they also reported an excellent visit.  And, even better, we are invited to breakfast with Mr. Portman in person tomorrow morning!  I am so happy that I will be able to attend!

Carol’s Second Day at the Advocacy Summit
Reflecting on the day’s events while waiting for dinner.  Today, after another excellent kickoff by Christopher Cush, we visited our Senators’ offices.

Because we had such a large group from Ohio and our appointments were only 1/2 hour apart, we split into two groups.  I was with the group visiting Sherrod Brown.  We met with his legislative assistant who expressed support for what we are asking in support of those of us with arthritis: Patients Access to Treatment, loan repayment forgiveness for pediatric rheumatologists, and inclusion of osteoarthritis and rheumatoid arthritis in Department of Defense funding.

Katherine Hermann, Taylor Guerrant, and Laura Kichler did an incredible job in telling their stories and making the asks. I am very impressed with their poise and a maturity well beyond their years.

When the group that met with Rob Portman joined us, they also reported an excellent visit.  And, even better, we are invited to breakfast with Mr. Portman in person tomorrow morning!  I am so happy that I will be able to attend!

Day 1 Post From Katherine Herrmann

Finally here in DC!! Today was exhausting. To be honest, I wasn’t sure I was going to be here. I just got out of the hospital yesterday evening! I just couldn’t miss this though!

We took off at 11:30. I don’t know about anyone else, but the pressure from the airplane makes me swell up like a balloon.

The intermediate session was the best thing. I got to join a team and we took on the role of a Congresswoman to see what it was like. Can I just say I have a new found respect for them?! We had two and a half hours of this session and it still didn’t feel like enough time!!  I could have totally played all night long if I was allowed.

Then I had the team session. I feel like it was good to be around other kids my age. A lot of them had never attended the summit before and I think a lot of them were intimidated. It was nice to talk to them and put their minds at ease. Plus, I made a few new friends. 

Today has been long and exhausting. I am super excited to get to the Hill tomorrow. It’s almost bed time for me. Early day tomorrow. Updates to come!
<3

Day 1: Arrival Day from Beth Brown

So much information — I feel as if I can’t retain another bit.  Today, I attended the lecture “Arthritis Treatment: Past, Present, Future” by Dr. John O’Shea of the NIH. Some of what he shared I’ve heard before each time I do hear about the history of arthritis treatment, I am astounded at how far we’ve come in the last 40 years.
 
He reminded us of how everyone – across all political lines – believes in reducing human suffering and curing disease.  I will continue to remind myself of this as I meet with legislators and their aids over the next two days.
 
I am humbled to see how many people came from all over the country to talk about arthritis, share their personal stories and urge Congress to take action. The energy here is palpable and I am nervous and excited to get started tomorrow – nervouscited as my daughter would say.


Meet Our Bloggers! Beth Brown
Beth is just one of our bloggers that will give you a play by play of her time spent on Capitol Hill advocating for arthritis.
I am the Division Vice President of Central and Western PA and West Virginia.  I have been working for the Arthritis Foundation for four years.  I look forward to learning about effective strategies for communicating with lawmakers.  I also look forward to meeting those living with arthritis.  I believe having so many people impacted by arthritis meeting with lawmakers must have an impact on all parties – for the better.

Meet Our Bloggers! Beth Brown

Beth is just one of our bloggers that will give you a play by play of her time spent on Capitol Hill advocating for arthritis.

I am the Division Vice President of Central and Western PA and West Virginia.  I have been working for the Arthritis Foundation for four years.  I look forward to learning about effective strategies for communicating with lawmakers.  I also look forward to meeting those living with arthritis.  I believe having so many people impacted by arthritis meeting with lawmakers must have an impact on all parties – for the better.

Meet Our Bloggers! Katherine Herrmann
Katherine is just one of our bloggers that will give you a play by play of her time spent on Capitol Hill advocating for arthritis.

My name is Katherine Herrmann. I am a 16-year-old junior in high school. I live near Cincinnati Ohio. I was diagnosed with polyarticular juvenile rheumatoid arthritis when I was only 16 months old.
I have been involved with the Arthritis Foundation for many years. I recently won the Emerging Leader in Advocacy award for all of the work I have done. I tell my story at many events. I help to plan things such as the Fall Family Camp we have each year and the &#8220;Kids Zone&#8221; at our local arthritis walk.
I love learning all the facts and statistics that back up our efforts. I love learning it and then using it when I speak again. I am looking forward to seeing all of the friends I have made through the Arthritis Foundation events. The family I have made through the Foundation are some of the only people who can ever truly understand what I go through on a daily basis. To be surrounded by them for a whole three days is a blessing.

Meet Our Bloggers! Katherine Herrmann

Katherine is just one of our bloggers that will give you a play by play of her time spent on Capitol Hill advocating for arthritis.

My name is Katherine Herrmann. I am a 16-year-old junior in high school. I live near Cincinnati Ohio. I was diagnosed with polyarticular juvenile rheumatoid arthritis when I was only 16 months old.

I have been involved with the Arthritis Foundation for many years. I recently won the Emerging Leader in Advocacy award for all of the work I have done. I tell my story at many events. I help to plan things such as the Fall Family Camp we have each year and the “Kids Zone” at our local arthritis walk.

I love learning all the facts and statistics that back up our efforts. I love learning it and then using it when I speak again. I am looking forward to seeing all of the friends I have made through the Arthritis Foundation events. The family I have made through the Foundation are some of the only people who can ever truly understand what I go through on a daily basis. To be surrounded by them for a whole three days is a blessing.