Char Burke's Comments

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At 10:53am on May 4, 2010, Tonya Carlone said…
Hi Char,

I'm so sorry, I got one of your messages and meant to get back with you. Just got crazy around here and I was under the weather for about a week or so, better now. Yes, I'm still interested in helping. I'm hoping to be able to attend, but sometimes my husband goes out of town on a moments notice, so I'm always kind of up in the air about attending things. We will buy tickets though even if we can't make the event, but hoping we will. Sure sent me the documents you have, I got a few things from Ryan at PPMD. I will probably need to tell Kohls that another person should be the contact. I will set it all up, but another person to talk with in case I can't attend. I try to make calls in between all the other stuff going on here with the kids. We are doing good, I'm leaving for Cincy May 25th. Hope your doing well!!!
At 12:51pm on April 21, 2010, Tonya Carlone said…
Char,

It was so nice talking with you the other night!!!! Just wanted to say hi and call me anytime, Will is lucky to have such a wonderful Mommy as you :-). Have a good day!! T :-)
At 8:13pm on April 16, 2010, Tonya Carlone said…
Hi Char,

I just sent you a friend request. Can you call me or can I call you? Just send me a message after adding me as a friend. I just went to the comic relief section here on PPMD, this looks like a great event. I wanted to find out what just what types of screens will have company logos on it, is it outside somewhere? It just could help me to try to get sponsorships if the companies are getting some really good exposure. Thanks!!!
At 7:36pm on April 16, 2010, Tonya Carlone said…
Hi Char,

Okay, Kohl's wants to help us. I am submitting over the details of the event and Kohl's is going to send me all the paper work to get the ball rolling. What they will do is automatically give PPMD $500 and they will have a sign up sheet for any of their employees to donate their time to help. I suggested their employees maybe help greet people at the event and help us with whatever we need. The A-team event requires them to have their employees vounteer time to help us. The last fundraiser I did, I worked with the Covington Kohl's and were wonderful. I'm excited that the Redmond Kohl's now is going to help. I will keep you posted. Tonya
At 2:07pm on April 16, 2010, Tonya Carlone said…
Hi,

Oh, please don't think you pressured me. I am happy to help!!! ALL our boys need our help and I'm so happy to help in anyway. Also, I have so appreciated your help and input, so we are here for each other and to support each other.

I will be sending out a request for the Great Wolf Lodge to possibly send us a gift card. I contacted Ryan at PPMD, I just need to have it in writting on letter head to request a card. Also, I also need to send a request to Anna at Bellevue Square in writing to possibly get a donated gift card. I have the contact name at Kohl's and I will try to get the A team event set up. California Pizza Kitchen in Bellevue will have spent all their money this year, but will get more in June!! I am also sending a request to Cheescake Factory to the lead manager. I contacted the Woodmark Hotel in Kirkland, waiting for a call back. I am in the process of checking to the different spa's in Kirkland to see if we can get a donation. I have a message in for the Manager at JCPenney and Bel Square to call me back. Also at Nordstrom's. I just wanted to keep you posted on who I am asking for donations.
At 1:09pm on April 15, 2010, Tonya Carlone said…
Hi,
We'll I can try to call some companies like Safeway or other places in Kirkland to see if they are willing to donate gift cards or anything that could be auctioned off. I just need more details from you such as where the event is taking place in Kirkland, I also could try to set up an A team event from Kohl's which is an automatic $ 500 for PPMD, that's huge in its self. Let me know the location/details about the comedy stuff so I sound like I know what I'm talking about and I'll call Kohl's to start. I have all the 501 3 (c) stuff from our fundraisers, so that's easy.
At 12:02pm on April 15, 2010, Wyatt's Mommy, Melissa said…
Char, I think that Tom and I will be able to attend the comedy night. If not, I will plan to buy tickets anyway. Where can we purchase tickets?

When is Pat going to be here? For the comedy night? Is the FACES group planing a meeting, I don't really understand what you mean by offical start 5/24. What does that mean exactly?

Tom and I met Pat about a year ago, it would be nice to see her again.

I'm excited for the comedty night, where is it going to be. I know Kirkland but where in Kirkland?

Talk to you soon.

Melissa
At 11:17am on April 6, 2010, Tonya Carlone said…
If I can help let me know!!!!
At 11:16am on April 6, 2010, Tonya Carlone said…
Also, contact your local Kohl's, they do what's called A team events all through out the year to help non-profits. They provide 5 of their workers to help for I think 3 hours for free and the non profit will automatically get $500. It's so worth it and me and Melissa did A team events for Coach to Cure.
At 11:10am on April 6, 2010, Tonya Carlone said…
Thanks for the info Char!!! That's a great fundraiser, yes, let me know the details and well be there. I can definately let my friends and family know and get some of them to come as well. I bet some local Kirkland companies would donate gift cards or items. We did a fund raiser for Coach to Cure and got a UW signed team football and Seahawks signed football and Sport Clips donated a basket of men's hair products so we did a raffle for the items. Is there a comedy club in Kirkland?
At 2:27pm on April 5, 2010, Tonya Carlone said…
Hi Char!

How are you? it was so good to meet you at the meeting in Feb. How is Will?

I have a question for you. My husband and I are wanting to set up a trust for Gavin and in one of the discussions you were talking about the ARC. Can you tell me about that or any contact information you have.

Thanks :-)
Tonya
At 9:09pm on April 4, 2010, jenn said…
great news about will! we had good news as well, max just continues to get stronger and fatser, which is pretty strange with dmd, but we like it...and austin is weaker but his heart has not gotten worse, also his breathing and weight are ok as well. we have cut him to 1000 cal per day which will be a challenge but very important. we hope to be getting the boys into exon skipping this year, so no hgh for either of them, although max is so small we really wanted to try it, the trial criteria wont allow it. we have arrived home to spring weather so that brightens the mood for us all. hope you all are well, take care, jenn
At 12:51pm on March 29, 2010, Wyatt's Mommy, Melissa said…
We would love to come. Keep me posted! Good luck in Cincinnati. Let me know how that goes. I think abiout you guys alot. Take care.
At 1:14am on March 11, 2010, Jeni Ward said…
I sent you an e-mail.
Thanks for saying my kids are cute. They are pretty cute. Aren't they all, though?
Jeni
At 11:33pm on March 3, 2010, Jeni Ward said…
Char,
Thank you for the nice message you sent me after the conference at the UW.
We would love to get together some weekend for a play date. Colin's older sister is 7, Colin is almost 5, so I think it would be fun for them to get together with Will. Let me know a good time for you. My email is wardjeni@hotmail.com. Phone 425-673-6416. I'll try to email you, too.
At 7:50pm on February 24, 2010, Kim Innabi said…
Hi Char, I just saw your questions on Nicholas's wheelchair. I'm going to send you a message later tonight and tell you about it. Thanks for the friend add - your son is adorable!!!
At 8:31am on February 16, 2010, Beaus_Dad said…
Hi. Thanks for the offer but we just recently moved out of Seattle to Dallas, TX.
At 2:01am on February 5, 2010, Wyatt's Mommy, Melissa said…
I'm so glad that we finally met in person. I'm so glad to hear that Will is doing well. Take care.
At 4:01am on January 1, 2010, Wyatt's Mommy, Melissa said…
thank you! I will ask her.
At 1:47am on January 1, 2010, Wyatt's Mommy, Melissa said…
The drink was recommended by another mom, it's called miracle fruits of the world (or something like that, my mom picked it up for me, so I don't remember the exact name). Oh I forgot about the VD3, Wyatt is actually on 3000IU, his VD3 level was low for a long time. The Endo doctor that we see in Seattle (fabulous lady, she's spoken with Dr. Wong and Dr. Rutter a few times and she is on the same page in regard to Wyatt's care as they are) had him on 3000IU (and it was finally normal) then about a month ago she and Dr. Wong agreed to put him down to 2000IU again and his level went back down. So just this week, he's back up to 3000IU. Is Arginene are pill? Can I get it in a liquid? We met Pat about 4 months after his diagnosis and she said to me, "Are you ready to roll up your sleeves and fight for Wyatt?" Her saying that to us really showed that she believes there is a reason to fight, so that's exactly what we did. I really mean what I said, you helped me more that you will ever know. Happy New Year! We will meet soon!

Melissa

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