This week’s Bradenton Herald featured Connor and Wobbly Feet Foundation to help raise awareness of Ataxia Telangiectasia!
Today Connor’s school dedicated 4 new wheelchair accessible picnic tables and 2 Buddy Benches! All equipment was purchased as the result of a school-wide fundraiser hosted, planned and run by the 5th grade student council. With a goal of $2500 they raised over $4000, exceeding their own expectations! Congrats Bashaw Bobcats and thank you for bringing attention to special needs children and all children looking to be included!
Announcing Wobbly Feet Foundations 2017 events:
Wifflemania 9– Monroe Township, New Jersey. June 11th, 2017
8th Annual Pasta Bar for a Cure of A-T– Englewood, FL. October 21th, 2017
6th Annual Greens for Genes Golf Tournament – Sarasota, FL. November 17th 2017 (website coming soon!)
Lakewood Ranch Music on Main. Lakewood Ranch, FL. December 1st, 2017
Hopeful… after recent testing in Houston, we found out Connor has been accepted into the 1st phase III clinical trial of a formal treatment for Ataxia Telangiectasia! We will be bringing him back to Houston once a month for at least 1 year where they will take out 50CC (approx 15 tubes) of his blood out and infuse it back in containing the drug, a steroid. There are always risks involved when undergoing a trial and the process itself will not be easy, especially for a 10 year old, but- Connor is up for it and we’re hopeful that this may be an answer to our prayers… for him to maintain independent/minimal assisted mobility for a long as possible! We’re thankful this trial exists and for the opportunity for Connor to participate. The possibilities of the results could mean all diagnosed will be able to fight back against the neurodegeneration and live longer, more independent lives! We ask for your support and prayers during this process.
For more information on the study, click here… A-T Clinical Trail
WOW! What started as a year to scale back to 2 fundraisers, ended with 7, and we are so very thankful! With the success of these events, we blew out our original goal of $75,000 in 2016 and ended raising over $96,675!!
With this success, we have contributed $25,000 towards the A-T Children’s Project’s Global A-T Data Platform, bringing our total contributions for this project to $65,000! With the launch of this project Q4 of 2016, 140 children have already provided their DNA and medical information which has been compiled into useful information accessible by researchers and physicians world-wide. We are so honored to be able to make this contribution and are hopeful for a formal treatment in the future because of it!
We are excitedly looking over new opportunities and will be reaching out to A-T families to provide new Grants for life improving, uncovered, medical expenses to continue making these dollars count!
Thank you to all who helped us reach this incredible accomplishment! We wish you a very Happy New Year and look forward to continued success in 2017!
The Dzembo family and Wobbly Feet Foundation Board of Directors#teamconnor, #cureforataxiatelangiectasia, #hope, #careaboutrare, #wobblyfeet
Summary of 2016 events:
- 2016 donations- $4,386
- Derby for a Cure (co-beneficiary with Another Day for Gray)- $4,400
- Billy Stern Memorial Fund- $1725
- Wifflemania 8- $1150
- 7th Annual Pasta Bar for a Cure of A-T- $45,700
- 5th Annual Greens for Genes- $28,165
- Cookies for a Cure of A-T (hosted by Loodles Desserts)- $3,250
- TeamConnor Disney Marathon Weekend (1/2017- an A-T Children’s Project fundraiser)- $7900
Bradenton Macaroni Kid, July 21st 2016… Meet our Mom on a Mission this week, Samantha Dzembo!
Research update: The A-T Children’s Project (www.atcp.org) has launched the Global A-T Family Data Platform & Genome Sequencing Project, a database of clinical records and the DNA sequencing results of children diagnosed with A-T from all over the world. This information will readily provide scientists/researchers information during their quest for a formal treatment & cure of A-T! Last year, due to our generous donors and successful fundraisers, WFF was able to contribute $40,000 to this project for the genome testing! This is very exciting news which keeps hope of a cure for A-T a reality! Thank you donors and THANK YOU A-T Children’s Project for making this possible! Visit http://www.atcp.org/DataPlatform for full details! #dollarsatwork #hope #cureforataxiatelangiectasia #teamconnor
The 7th Annual Pasta Bar for a cure is announced!
This years silent auction will again be online! Bid from anywhere in the U.S.! Preview is up and items will be added as they are received… bidding starts 10/01 and closes 10/15 at 8pm at www.bidpal.net/pastabar7. #pb4at
Thank you to all who come to Danny P. Ryan Field today to help Wobbly Feet Foundation #StrikeOutAT
This event featured Wiffle ball teams, great raffle prizes & giveaways. Official WiffleMania 8 T-shirts are still available for just $10!
HUGE thanks to Founding Fathers Andy Stern and Vinny Small, UBS Bank NYC (Nikita Stern), all event sponsors, those who played, volunteered, cheered, donated helping to raise $1150.00 for Wobbly Feet!!
Today, Executive Director Nick Dzembo accepted a check for $216.40 from Tatum Ridge Elementary School. Special thank you to Julia Wood for suggesting, and her student council for accepting Wobbly Feet as the beneficiary of their Blaze Pizza fundraiser! We are honored and are putting these dollars to work immediately!
Not only did Julia help raise these funds for Wobbly Feet, but she has written an essay on A-T! She has won her school essay contest and is moving on to the district competition! We are so proud of you Julia! Thank you for raising not only $$ but awareness for Connor and all others with A-T!