Search This Blog


Thursday, May 1, 2014

Happy Ichthyosis Awareness Month 2014!

There's a whole lot of talk about "raising" in the special needs community… Raising awareness. Raising funds. Raising each other up through words and actions as we encounter challenges and setbacks.

What does it really mean?

Spreading love.

Spreading the message that we're all families who just want the best for our kids, who all want our kids to be happy, and that we look out for each other.

So this month, in celebration of Ichthyosis Awareness Month, we're hosting Balloons for Brenna…and we're going to see how high we can "raise" these balloons! Will you help us raise our Balloons for Brenna, so that we can raise awareness and raise up other families like ours?

With just $10 to the Foundation for Ichthyosis and Related Skin Types (or FIRST), we can do so much "raising"…with $10, you will assist us in continuing to educate the world about ichthyosis.

Our family is very close with FIRST and its staff, which is a patient advocacy organization recognizing the unique challenges faced by the ichthyosis community. FIRST strives to ensure that those affected with ichthyosis receive the best possible support and information regarding medical treatments that are currently available.

According to FIRST, each year more than 16,000 babies are born with some form of ichthyosis. Because ichthyosis is a rare genetic skin disorder, it often does not receive the attention or funding necessary for sustained progress toward a cure.

FIRST says, "The awareness-raising efforts from FIRST members are the most critical component to an upward climb toward better treatments, and an eventual cure."

With this one little action today, you are helping us spread love. One small $10 donation that will be a HUGE gift to families like ours, by helping us educate about ichthyosis.

Help us turn stares into smiles.

Help us turn bullying into acceptance.

Help us turn "different" into "beautiful."

Will you help us spread this love?

Last year, we raised a whopping $2,590 for FIRST…and I think we can top that this year…so we're shooting for $3,000!! With funds like this, FIRST can continue to help families with information cards to pass out in public, packets and guides for educational systems when our kids go to school, and many other kinds of awareness events, like major league baseball games.

With your $10 donation, our balloons will get a little higher…and you'll be creating a better world for kids like Brenna.

Go here to give in honor of Brenna!!

I will update throughout the month as we work toward our goal…


  1. Donation made!!! :-) Happy IAM!!! :-)

  2. I've read your blog for a long time and have been continually inspired by your courage and faith. Glad to give a little bit back. Keep us posted as you make progress toward the goal! And thanks for your good works!

  3. Hi Courtney, I'm a long time reader of Miggy's blog and a brand new reader of yours. First of all, I want to say how adorable both of your children are. My kids are 9 and 12 and I wish I had relaxed a bit and enjoyed that time more. Secondly, I want to recommend a children's book for you that my children loved and now love to read to my 3 and 5 year old nieces. It's called The Seven Silly Eaters by Mary Ann Hoberman and it is the cutest children's book I've ever read. I think Connor and Brenna will love it. And I just read a book I loved called Astonish Me by Maggie Shipstead. All the best to you and your adorable family.

  4. Brenna is so sweet and pretty. My friend Carly has this condition and blogs about it at Tune into Radio Carly. She just got engaged which is exciting. Am not sure if you know her blog, it is on my side bar xxx


I love to hear from you, thank you for sharing your thoughts! Your comments will be visible after approval!