Sunday, November 6, 2011

Addi's Drawing from the Heart

Times are tough financially. Not just for us, but for everyone right now. 
Yesterday my friend Katie and I put our heads together trying to figure out how we could best help Addi and really, truly, the answer is a cure. Thats not available at the moment so our next best hope is research and research takes dollars. We know that everyone's purse strings are tight right now so that is why we are having a "Drawing from the heart".

It's a little untraditional in the sense that we are only "selling" one drawing ticket per person.


Because we want you to give from your heart. 
Sometimes I see auctions online for fundraisers and everything is going for hundreds of dollars which is wonderful for those causes. However, being a teacher I ususally don't have hundreds of dollars to contribute. With this drawing you just need to donate with your heart. We want you to know that EVERY SINGLE PENNY will be put to good use. If your heart says a dollar, then donate a dollar. If your heart says five or ten or twenty then do that.  If your heart is unsure consider these amounts:

{I pulled this from my friend Megan's FOP page and added some of Addi's info in}

$ 16 for a bottle of Naprosyn to limit the body's inflamation abilities. 
$ 56 Number of days a typical "flare-up" lasts
$ 200 Approximate number of known cases of FOP in the United States
$ 230 Approximate mileage between our home and Primary Children's Medical Center
$ 400 Approximate number of known cases of FOP worldwide
$ 499 Cost of a Newcon Professional Binocular Microscope
$ 641 Age, in days, when Addilynn was diagnosed with FOP
$ 1050 List price of the "Breezy 600" Lightweight Wheelchair
$ 1600 Approximate mileage between our home and Doctor Kaplan @ U Penn $ 2500 Estimated number of cases worldwide that have yet to be diagnosed as FOP (as with all orphan diseases, correct diagnosis can be elusive because so few doctors are aware of the disease.)
$ 5400 Approximate cost of an in-school, non-government subsidized person to watch Addi and make sure she’s not knocked over in the school playground!

$ Millions - Number of people with diseases that are helped by FOP research! Be the first to donate a million!

  Now, I don't expect anyone to donate millions, 
{But if you feel so inclined you are DEFINITELY welcome too!}
but I love that this research is going to help more than just FOP patients. 
Who knows someone who has osteoporosis or someone who has had a hip replacement and suffered through heterotopic bone growth? FOP research will unlock the answers to bone growth questions in general and help way more than just our own little Addilynn and other FOP patients. 

So are you ready to put your work boots on and find a cure for Addi?

Here's how:

  1. Click here and head over to
  2. Fill out the donation slip and donate to Addi's Drawing from the Heart. Donations go through Paypal.
  3. Make a comment on this post so I know who participated.
  4. Share this with your friends on Facebook, Twitter, @ work, and around your neighborhood. 

Please remember that even little donations are important. Over 75% of FOP research is funded through the friends and family of FOP patients like Addi. YOU are critical to finding a cure for this sweet girl.

...And as a bonus we are working on getting some great drawing prizes which will be showcased here through the next couple weeks. Please donate by 12:00 P.M. on November 26th to be part of the raffle. As soon as we get the final list of donors from IFOPA we will draw for the winners and announce them here at Addi's FOP Journey. Drawing prizes will be either delivered or mailed. If you are a vendor and would like to donate one of your products to the drawing, please email me at sblack{at} 

Thank you for your love and compassion. 


The Black Family


  1. I just donated and also posted on Sending Smiles!!

  2. I donated under Jon's name (since paypal is in his name). :) I'll be sure to spread the word!

  3. Oh she is so beautiful. I donated and I will pass this info along!!

  4. I just donated and I will make sure to keep spreading the word for you. Let me know how else I can help.

  5. I donated. I am a friend of Gerberta. Your story is very touching. You are in our prayers.

  6. I wish my donation could fix my heartache, and yours! Thanks for giving us an opportunity to do something to help!
    Rebecca Larson

  7. I am a friend of Gerberta. I pray that through research you are able to find a cure.

  8. We would love to do anything that can help your beautiful family! James and Julie Gneiting

  9. We love Addi and want to help with whatever you need! John and Lori Ellsworth


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