Last year we participated in Seattle's Step Forward to Cure TSC walkathon. It was our first time walking as Team Joel. Thanks to family and friends we were able to raise $1,235! We never imagined we would be able to raise that much in donations. We were blown away by the support!

This year we will be participating in Ohio's Step Forward walkathon. We have been trying to fundraise for a few months in between moving across the country. It has been stressful at times, but it's so worth it to help this great cause. 

Last year I got word that people were saying they would not donate because it wouldn't help Joel directly. I don't know where they got that information, but it's false. Every dollar raised for TSC research helps Joel directly! The research is not only to hopefully find a cure for tuberous sclerosis complex but to also find better treatments for those suffering with this horrible disease. The scary reality of TSC is that it can change at any moment. I cannot stress how important this research is!! If it wasn't important I wouldn't be begging everyone and their mama to support us. I would have stayed home back in February instead of leaving my baby for the first time ever just so I could speak to legislative health aides on Capitol Hill.

When I went on my DC trip I learned so much about TSC research. For instances, I learned that the TSC research is also helping to unlock doors for autism, epilepsy, cancer, and even traumatic brain injuries. Amazing right? 


One thing is for sure, I will not stop begging people to donate (even a $1.00!!) to support this research until a cure is found. I'm praying the cure will be found within our lifetime! If we don't advocate, who will?


You (yes, you reading this!) can help us raise awareness about tuberous sclerosis by sharing our story with everyone you know! You can also help by sharing our team page so people can sponsor Team Joel. Every bit of support is greatly appreciated! :-)

 

Purple Day

Today we are wearing purple for global epilepsy awareness!

{To learn more about Purple Day click here}

My Trip To DC & The Flu

I had a great time in Washington, DC for March The Hill! I was only able to meet with 10 Legislative Assistants but it still felt very empowering to be there & to be able to share our story. Overall the meetings went well, and I think we will definitely have lots of support from Congress to continue the funding for the Tuberous Sclerosis Complex Research Program.

Meeting everyone from the TS Alliance was bittersweet for me. It was awesome to be surrounded by people that understand exactly what we are dealing with and have felt the same fears we do.. but it's also heartbreaking to know so many people are suffering from TSC. I made lots of new friends though, and I hope I will be able to see them all again this summer.

I was worried about how Joel would handle me being away (because I had never been away from him overnight) but he did way better than I ever imagined! I was gone for three days and I think it was harder on me than him. I arrived back in Seattle on Thursday morning and I was so happy--I couldn't wait to see my little man and his daddy! Unfortunately I woke up yesterday morning with a 103.5 fever and had to go to the ER.. I have the flu so Jer has me quarantined to our bedroom. Poor Joel doesn't understand why he can't be in here with me so he knocks on the door and cries for me. It breaks my heart! :-(

March The Hill here I come!

Ever since Joel was diagnosed with tuberous sclerosis complex I have prayed that God would help me be an advocate for Joel + others that are suffering from TSC. And oh man, He definitely came through!

Last summer, after participating in our first Step Forward To Cure TSC walkathon, I was asked if I would be interested in becoming the Chair for the TS Community Alliance of the Pacific Northwest. Of course I said yes! (Volunteering for any and all things TS related has been my therapy. It makes me feel like I'm making a difference, even if I can't physically heal Joel.)

Every year the Community Alliance Chairs, Board Members and other supporters and volunteers gather in Washington, DC from across the country to meet with their House of Representatives members and Senators to ask for their support for Federal TSC research funding. This year I will be going and representing the Pacific Northwest (Washington and Oregon)!

 

If someone would have told me a few years ago that I would be going to Washington, DC to have meetings with Representatives and Senators inside the Capitol, I would have laughed and walked away saying "bless your heart!" I never in a million years thought I would be doing this. (Then again I never thought I would have a child with "special needs" either.) ME.. a stay at home mom..!!!

 

 

I have collected letters to give to the Representatives and Senators. The letters are from people in the PNW that are struggling with this horrible disease. I can't even begin to explain how honored I feel that I will be able to hand deliver their letters and advocate for them! I just hope and pray I will find the right words to explain how important federal funding for research to find a cure really is!! 

 

So, next week if you think about, please keep me in your prayers.. I'm definitely going to need it!