Addie made the paper!

Our local paper did an article on Addie, you can read it here:
http://www.wiscnews.com/news/local/article_c2df044a-d152-11df-a8c2-001cc4c002e0.html

Representative Baldwin talks about Our Daughter

Representative Baldwin talking about Our Daughter in her opening statement at the Committee on Energy and Commerce meeting on 9/23/10.

Thank you Representative Baldwin!

Meeting Representative Tammy Baldwin

On August 11 we were very lucky to be hosted by Tammy Baldwin for a meeting on Arthritis. We were able to share our story and to ask her for help in fighting Arthritis. Our daughter started by telling Tammy that she had Arthritis, that her knees sometimes hurt but that she took shots and pills to make them feel better. She said she didn't like the shots much.

Tammy listened to all that we had to say and was very involved in the conversation. I think that she was shocked when I told her that our daughter is on a chemotherapy drug and we have no idea how or why it works, what the long term side effects are and how long she should really be on it. I could really tell that she was interested in what we had to say and how she could help. She came up with some great next steps that could really help further Arthritis research.

At the end of the meeting our daughter gave Tammy a couple pictures that she had been coloring and we gave her a photo of our daughter holding a Thank You sign like the picture below.

Tammy had just returned from Afghanistan and I thanked her for visiting our troops. I can't thank Tammy enough for her time, it really was a special experience! We look forward to future meetings!

2010 JA Conference Notes - Advocacy

Advocacy is a huge part of how the AF directs money to research. Congress appropriates millions of dollars each year to disease research and we have to do our part to get our share. However, congress won’t listen to the foundation, we don’t have enough money to pad their election campaigns and the foundation isn’t a constituent. This is where you come in, we need your help to influence your congress person. They will listen to their constituents and if we all let them know this is important our voice will be heard. Sign up to become and e-advocate and get alerts when we need your help!

Advocacy has helped to create a loan repayment plan for docs that become pediatric rheumatologists. However, it’s not funded so we still need to keep the pressure up. Our other goals are to create a registry of kids with JIA to facilitate research. We also need to fund research to discover the answers to questions:
What are the long term affects of the meds we are on?
What is the best treatment plan?
When can we reduce medications?
When should we not treat at all?
Can we find a cure?
What are the best combo’s of drugs?
Should we treat it hard early or slowly?

The advocacy program helped the CARRA database secure short term funding from the NIH, we are working on longer term funding.
CARRA - Database of kids with JIA. It is totally confidential. This database of information is used to facilitate studies of the JIA disease. http://www.carragroup.org/

To become an advocate please go here:
http://www.arthritis.org/inside-advocacy.php

2010 JA Conference Notes - Fundraising Ideas

Fundraising ideas:
Any business that caters to children: Ask them if they will sponsor a night where the AF gets a % of the profits.
Halloween dance
Brat Stand
Have a night in - Get all kinds of at home parties (tupperware, avon, lia sophia, etc) to come to your home and instead of giving you product, give you a % of the profits.
Hold a silent or live auction
Golf outing
Bake Sale
Invite all your friends to a BBQ and charge admission
Letter campaign - Include a SASE to increase donations
Host a holiday party
Provide a food stand for a community event

Fundraising costs are tax deductible, keep track of mileage to go to fundraisers, mileage to foundation meetings, paper costs, postage costs, etc.

2010 JA Conference Notes - Get involved

Reason’s to attend camp, family days, networking events and the national JA conference:
Realize that you are not alone
Get great information on how to deal with the future
Be reassured that your doc is doing the right thing
Get a list of questions for your doc
Meet a lot of great parents to help you along this journey
We hear other parent’s concerns and when we encounter the same thing we are better prepared.
Find out about new treatments
Advocacy networking
Reason’s for your child:
Realize they are not alone
They learn about the disease from a kids perspective
They get answers to their questions from their older peers
Meet life long friends to help them through the bad days
Realize that flares are normal
They see older kids going through the transitions and find out what works and what doesn’t. (Daycare to school, middle school to high school, driving, college, etc)

2010 JA Conference Notes - Kids with JIA

Kids with JIA have sixth sense about when someone is struggling with something. They grow up VERY empathetic and grow to be caring supportive adults.

I have never met a kid with JIA that would go back and change their life and not have it. It makes them so tough, empathetic and caring that they wouldn’t want to be “normal”. To that point a question comes up often about whether people with JIA want to have kids in the future. They are worried that they may pass the disease along to their kids. While no risk has been medically proven it is still a concern. The response that I have heard a few times and makes alot of sense is that we know no one that has JIA that would go back and change it, so if go forbid your child gets JIA they will feel the same. On top of it all you will be prepared to help them fight. If you didn’t have JIA you wouldn’t get to meet all of the neat people at the AF or go to great conferences. You wouldn’t get to have such great fun at the walks and other events. You wouldn’t have met all of your lifelong friends from camp.