February 15, 2012
by marfmom
1 Comment
Today I’m writing over at BlogHer, if you’d like to take a peek. It’s my submission for a contest that Ricki Lake is running, but also just a post I’ve had swimming through my head since last week. I may cross-publish the post here later.
February 12, 2012
by marfmom
14 Comments
Today, I want to ask all of you for some help. Last spring, my friend Sarah guest posted her son Danny’s diagnosis story. Danny is a few months older than Baby J and is severely affected by Marfan syndrome. In fact, he will most likely be having heart surgery very soon.
Danny’s case of Marfan is so severe there aren’t many doctors experienced in how to treat him, though there are a few here in the United States (Danny & Sarah live in the UK). Every summer, the best Marfan syndrome doctors come together at the National Marfan Foundation conference to provide free exams and lead workshops on the latest advancements in the syndrome. My friend Erin and I want to bring Sarah and Danny to this summer’s conference in Chicago. He’d be able to get a free echocardiogram and eye exam, plus consults with all the specialists. Sarah would be able to take home valuable information to Danny’s physicians back in the UK, as well as connect in person with the women of other affected children whom she’s been corresponding with for the past year. This would be a life changing experience for them.
Of course, Erin and I can’t do this alone. Here are some ways that you can help:
1) Donate. We’ve set up a page on YouCaring.com to track donations. It also lays out the budget for Sarah & Danny’s trip. We have a goal of $3,497. Every dollar helps!
2) If you’re near Seattle, WA, consider attending the Chili Feed & Silent Auction that Erin is organizing at her church. Details are on Facebook.
3) I’m organizing an online auction for mid April. Please consider donating an item to be auctioned off, or let me know of companies you’ve worked with who might be willing to help.
4) Spread the word! Blog about this, share this on your Facebook pages, pin it, re-tweet it, email it, whatever.
And if you have ideas of other ways to find funding, please let me know. NMF scholarships are only for people within the USA. Sarah is looking into funding from UK groups. If for some reason Danny and Sarah are not able to attend conference (we don’t raise enough money or health issues arise), the money raised will go to helping cover Danny’s medical and therapy expenses.
THANK YOU for helping in any way that you can.
And again, you can donate to Danny here.
February 9, 2012
by marfmom
2 Comments
It’s Friday, so you know what that means!
Come on over and link up the favorite post that you wrote this week. I promise I’ll come over and comment on each of your posts. I hope that you’ll spread the love and visit the blog or two above yours too. I’ll leave the linky up through Sunday night.