Just two clicks could make a difference

Would you give just two “clicks” of your time to help Hannah?  Chase Financial institution is giving away $25,000 to charities based on the number of votes they get.  

When you have such a rare disease like nGD, you don’t have the support (financially and people-wise) that the bigger causes do.  Here is our chance to get a real piece of support financially and in terms of people learning about nGD.  Do you have any idea what $25,000 would do towards research and support for Hannah and the other kids with neuronopathic Gaucher’s disease?  It would be a HUGE start!!

Please just take a moment, two clicks of your time, and vote to give us a chance at this huge gift?  (And please tell your friends)

10/26, Golf Tournament and Auction, San Jose, CA!

Coldwell Banker Residential Brokerage will hold its 13th annual Gregory Austin Macres Memorial Golf Tournament on Oct. 26 at the Palo Alto Hills Golf & Country Club, 3000 Alexis Drive. Registration is $135 and is open until Monday. A raffle and silent auction will also be held at the event.

The event is a fundraiser for the Children’s Gaucher Research Fund. Children’s Gaucher Disease is a progressive debilitating genetic disease that attacks children and causes a variety of systemic and neurological medical complications. The public is encouraged to participate in the tournament and may register by contacting their local Coldwell Banker Residential Brokerage office or sales associate. For more information on the Children’s Gaucher Research Fund, please visit www.childrensgaucher.org.

For more information on the Gregory Austin Macres Memorial Golf Tournament, call 925-275-3085.

Addison Bower Walk (Video)

Addison Bower Walk

Sept 20, Neuronopathic Gaucher Fundraiser – Virginia!

For anyone around the Fisherville, Virginia, area, please consider participating in this event.  This event will DIRECTLY help children like Addison (for whom the walk is named), Hannah, and all the other children diagnosed with Gaucher’s disease, types 2 and 3.

You can find complete details here, but are some of the details…

Amanda Bower Walk
Sunday, September 20th

Wilson Memorial High School
189 Hornet Road
Fisherville, Virginia

Registration, 1 to 2 pm
Start time:  2 pm

Registration fee (day of event):  $35
Early online registration:  $30
Children 2 – 12:  $15
Registration Fees include a Tshirt

Community Fundraising Ideas

I started going through all my emails from the past couple of days, and I came across one from another mom which had some great ideas on it.  These are some great community-based charity fundraising suggestions.  She gave me permission to share it with all of you. 

Some of these look like a lot of fun, and I can see them being done here!  (We had put our big fall fundraiser on hold, but this could kickstart it!).  If you have any more ideas to share, please add them here, and I’ll add them to the list!

* community walk
* golf tournament or minature golf tournament
* carnival/faire with local companies who want to promote to families
* special “night” with local high school sports event,
* “game show” night which is like a theatre performance with locals as participants with prizes
* Local teams or running groups to take on child as other non-illness related events (ex:  “we are running for child’s-name at URL.com”)
* Local school calendar/neighborhood calendar (candids are good) to sell
* comedy night with local comedians
* concert with local musicians
* Community book sale/flea market with all proceeds going to child (can be online as well)
* Talk to local corporations about taking on child as their “inhouse” charity for the period
* Parent/child community dance/evening at local rec center
* Child Art Show with luncheon
* Sports tournament with local children/families
* Community-wide scavenger hunt with local businesses to donate to draw customers in plus participants pay an entry fee
 
* silent auction/raffle with any of these
* Tshirt sales with any of these
* Bracelet sales with any of these
* Food sales with many of these
 
* Talk to local school booster clubs for ideas
* Talk to local churches for ideas

What a great night at Chic-Fil-A!

We had the fundraiser at Chic-Fil-A tonight.  I honestly did not have any clue what to expect.  Ethan, Hannah, and I got there at about 4:45 PM, as it started at 5 PM.  My friend and neighbor, Christy, met me there, and kept us company and “worked the wheel” (donate a dollar, win a prize) for the first hour.  It started off slow, but then around 5:45 PM, things started to pick up. 

By 6:00 PMish, it was a completely packed restaurant with at least 1/2 the people coming in carrying the pink or white flyer that was distributed!  It was PACKED!  We had friends come to support us, at least 1/3 of our street showed up, Ethan’s teacher was there, and Hannah’s developmental therapist even showed up!  I also met so many wonderful people who received the flyer from a friend who came to introduce themselves. 

It stayed completely packed until we left at 7:00 PMish.  We never ended up eating there, so we went through the drive through on the way home.  We didn’t stay until the end at 8 PM because Hannah was started to get really tired and a bit stressed out with all the people and chaos.  (She did great though considering how many people she saw that gave her hugs and love!).

It was a huge success in my eyes.  HUGE!  I don’t know how much money was raised, maybe a couple hundred dollars.  But the amount of people that turned up just to support us was the biggest success.  It must have been at least 50 or so families that came to be there for us because they wanted to be there for Hannah.

I do have pictures to share, but we are leaving for Los Angeles in 7 hours, and I better try and get some sleep!!!

Wonderful gesture from a friend

I got a box a few days ago from some friends of ours from New Orleans.  We actually met this couple in Russia, when we were finalizing our adoption for Abby, and they were finalizing their adoption of their son.  They are only a few weeks apart in age.   We have kept in touch over the years, and they brought home a new baby boy into their family right around the time we had Hannah.  Their boys are destined to marry my girls.

Back to the box.  So I opened up the box, and I saw a birthday invitation for their older son and a cute little gift for Hannah.  Attached to the invite was a letter from this couple asking that their friends not give gifts to their son but instead make a donation to help us fight for Hannah.  I cried when I read the letter.  It was beautiful, special, and I was just so moved.  Then, I opened the envelope that came with the package, and it was filled with numerous checks made out to Hannah.  They totalled over $600.  They held their own fundraiser for us.

I started bawling when I saw that.  We have had so many disappointments since we found out what we were dealing with, and this was just so unexpected.  I was overwhelmed that they cared so much for our family that they would do this for us!  I even called Daddy and told him…I think he thought something was wrong at first because I was still crying when I called to tell him!

I don’t have words to explain how wonderful this made me feel in so many different ways.  It wasn’t the money.  It was this incredible gesture, an amazing gift, from a connection that was made over 6000 miles away in a little city in Russia.  It was someone showing how much they believed in us and our fight for Hannah.   It was someone who wanted to do something extraordinary for us, our family,  to help keep us together.

T & M — Thank you, thank you, thank you.  We love you guys too.

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