Oh Happy Day!

Addi's first fundraising event raised a whopping

$2,521!!!


Words can't describe the gratitude I feel. I am especially grateful for Katie Wells over @ Katie Wells photography for getting the ball rolling on all this fund raising business. I am soooo very, very grateful for all the donations, large and small, towards FOP research. As a mother of a child that has this horrible disease, I can attest to the fact that I feel pretty powerless in all this except when I blog and try to promote IFOPA donations. Being able to do something about all this gives me hope. A gift not easily given to a pessimist who would rather be pleasantly surprised than have her heart let down. I was indeed, pleasantly surprised my friends.

Now to pleasantly surprise all of you!

Are you ready for this?

I bet you can hardly wait...

The winner list is here!

Here it goes!

And the winners are according to Random.org…

Kirstykoo $30 Etsy Gift Certificate: Alaya Kish

Case of Ellsworth Potatoes: Amanda Korth, Nikki Lewis, & Jodi Bozung

Lia Sophia Jewelry: Gina Smith

Candy Bar Bouquet: Gerberta Black

Custom Doll from Chrissy Lee Creations: Cierra Sundberg

Manwaring Cheese: Sheila Nelson

Define Your Space Vinyl Sign: Susie Clayton

Bow Board: Cindy Merrill

Premier Designs Jewelry: Leslie Wright

Pampered Chef Items: Trina Cupp

Hair Cut from Kyrie Anderson: John Ellsworth

Free Classes from Yoga Bliss and Zumba by Jodi: Julie Gneighting, Nellie Bray, & Shyenne Ellsworth

Caramel Tree Prize Pack: Trevor Shelton, Marva Kumer, Dave Ellsworth

Twilight Prize Pack: Gina Ortega

Bunnie Bows by Nellie Bray: Chrissy Lee

Ashley Curry Zumba Classes: Lori Ellsworth

Zumba Gift Basket : Kyrie Anderson

iTunes Gift Cards: Rachel Rubow, Kirsti Clark, Stephenie Heiden

Applebee’s Gift Cards: Meka Hilton, Alexis Bosco, & Ashley Curry

I am so grateful for the difference that we are making together. I am working on getting addresses and people hooked up with one another so it might be a little bit longer until you get your prize... Thank you for your patience!  

The Gift of Hope

Unofficial drum roll please...

Our unofficial total for Addi's research fundraiser is over $2000. 

Between the generous work over at Katie Wells Photography and our friends and family that have donated directly to IFOPA I think that we have raised at LEAST that much. 

This melts my heart. There are so many good people in the world.

When I hear the grand total from IFOPA in the next few days I will let you know and we will start dishing out the gifts from Addi's Drawing From the Heart!

People have been asking me how our trip went. They have been asking me how we are feeling about things. The answers:

We feel blessed. We feel hopeful. We feel loved. 

A few dollars here or there may not have seemed much to you, but it means the world to me. Just imagine that your donation is paying for a researcher to get one more hour in the lab and that extra hour is when they see something that leads to a break through... 

Thank you so much for your gift of hope! 

{Our Family in Camden across the river from Philadelphia}

Addi is so loved.

So our little "raffle" has turned into a BIG drawing! We heard today from IFOPA that legally we have to call it a drawing or else we need a license for gambling so donors are now officially donating to Addi's Drawing from the Heart. IFOPA has also given Addi her own tag line for donations when you donate! All of Addi's proceeds will go toward the lab at U Penn to help find a cure.

We are actually getting the opportunity to travel to that lab next week. We will be seeing Dr. Kaplan and learn more about Addi's diagnosis a week from Friday, and hopefully get to tour Dr. Shore's research lab too. As much as I wish Addi didn't have to deal with this, I am so grateful we have a great team of doctors and scientists on this. 75% of their funding comes from the families and friends of FOP patients like Addi. We are all important in keeping them going until we get a cure.

Our donors are doing a great job in furthering this cause and  are being so generous with this drawing! We now have over $500 in prizes and there are still more coming in. I have been so in awe this week of how much love has been shown toward our family and especially Addi. People's hearts are really showing their goodness to our family this week and we are so grateful to be surrounded by such wonderful people in this amazing community.

Katie has raised over $600 in Christmas Mini-sessions for IFOPA! She still has openings on the 19th if you are interested. Her pictures are priceless and donating with your heart will do more good than you know.

After some people expressed interest in donating later this month and our family's trip to Philadelphia next week, we have decided to keep our drawing open an extra week until November 26th. Winners will hopefully be announced Monday, November 28th, pending receiving our donor list from IFOPA.

Thank you so much for your love and support! Our hearts are full to the brim tonight!

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.

Why? 

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 IFOPA.org
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}sd251.org. 

Thank you for your love and compassion. 

Love,

The Black Family

November is for thankful hearts

I survived the week. I survived watching every trip and fall and bonk of my very wobbly 21 month old. This isn't a new thing--falling. The new thing for me is knowing that one day my little dare-devil's antics could change her life. But for today, I am grateful that some how her body is behaving its self when the genetic test says otherwise.

This week we people kept telling us that there were many prayers said and good vibes sent in our behalf. I am grateful for this. I really feel that this is helping us to keep walking in faith and avoid paralyzing fear.

Friends and family have been so good about asking what they can do to help and my friend Katie took action and hit the ground running with Addi's first research fundraising campaign. Katie is a very talented children's photographer and offered to donate a whole day's worth of photo sessions to IFOPA. She took some pictures of Addi today to kick off her campaign and gave me a sneak peak. I can't wait to see the rest!

Katie is also getting some awesome vendors to donate some fun prizes to a raffle for IFOPA research! I have also had some friends donate and we are so excited to be able to do something about FOP rather than feel completely helpless. Finding the cure may take years but each penny raised for FOP brings us that much closer. The sooner this cure is found, the sooner we can stop worrying about what could happen to this precious little girl.

I keep telling my self to have a good attitude. On Face book I am trying really hard to think of things I'm grateful for because it makes it easier to see the silver linings of all of those clouds that are hanging around us right now. It's not easy but it is doable. I am thankful for that. I saw this quote and it had meaning to me: 

In daily life we must see that it is not happiness that makes us grateful, but that gratefulness makes us happy. - David Steindl-Rast

Time to go to bed with a thankful heart.