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LWR Music on Main raises $6600 for Wobbly Feet!

LWR Music on Main benefiting Wobbly Feet Foundation Such a fun, and successful, night on LWR Main Street raising $6600 for Wobbly Feet!! Thank you to all who came out and supported this event, especially our #teamconnor volunteers and company partners (Gold Coast Eagle Distributing, Total Wine & More & Hello Gorgeous Photobooth) who we couldn’t have done it without! Thank you Lakewood Ranch Main Street for having us as your beneficiary, supporting research towards a cure for Ataxia Telangiectasia!

 

Family, hometown support… and cookies!

Family, hometown support… and cookies!
Thank you Clair & the NY Capital Region’s Times Union newspaper for this wonderful article in promotion of Kathy and Lara Dzembo’s Cookies for a Cure fundraiser for Wobbly Feet! 💚

http://m.timesunion.com/local/article/North-Greenbush-woman-s-cookies-raise-dough-for-12385002.php?utm_campaign=twitter-mobile&utm_source=CMS+Sharing+Button&utm_medium=social

6th Annual Greens for Genes raises over $34k!

We had an absolutely gorgeous day on November 17th at the Legacy Golf Club for the Wobbly Feet Foundation’s 6th Annual Greens for Genes Golf Tournament raising $34,810 towards a cure of Ataxia Telangiectasia! A very special thank you to our Platinum sponsor, Detweilers Propane Gas Service, and all our generous sponsors & donors, players, event committee & volunteers for helping to make this such an amazing day!

2018’s tournament will again be at the Legacy Golf Club on 11/16/2018. Details coming soon!

8th Annual Pasta Bar raises $47k!!

What a night!!! Thank you to our company partners, sponsors, donors, volunteers, bidders from home & guests who came out from near and far to support the 8th Annual Pasta Bar for a Cure, helping us raise $47,411!!! We’re humbled by your generosity and thrilled to put your dollars to work towards our mission!

2018’s Pasta Bar will be held in Englewood in mid – October. Date and more details coming soon!

#teamconnor #pb4at8 #careaboutrare #cureforataxiatelangiectasia #cantstopwontstop #suckitA

             

WFF provides $40,000, contributing to 2 new hopeful research projects!

Wobbly Feet is excited to confirm a $40,000 gift to the A-T Children’s Project to support 2 new important research projects launched this year!

  1. Therapeutic Strategies for Ataxia Telangiectasia Lung DiseasePrimary researcher: Dr. JoAnn M. Sekiguchi, PhD, University of Michigan. Grant period 1/1/2017-12/31/2018
  2. Enabling Drug Screening for Ataxia TelangiectasiaPrimary researcher: Edward C. Gilmore, MD, PhD, Case Western Reserve University. Grant period 3/1/2017-2/28/2018.

Click HERE for more details on these studies and for updates on previously supported research.

 

Thank you Richard Dymond and the Bradenton Herald for sharing our story!

This week’s Bradenton Herald featured Connor and Wobbly Feet Foundation to help raise awareness of Ataxia Telangiectasia!

Article 

Celebrating inclusion!

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!

Bradenton Herald

East County Observer – 

   

2017 events are announced! SAVE THE DATES…

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

Connor to participate in Phase III Clinical Trial!

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

An exciting look back at 2016

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:

  1. 2016 donations- $4,386
  2. Derby for a Cure (co-beneficiary with Another Day for Gray)- $4,400
  3. Billy Stern Memorial Fund- $1725
  4. Wifflemania 8- $1150
  5.  7th Annual Pasta Bar for a Cure of A-T- $45,700
  6. 5th Annual Greens for Genes- $28,165
  7. Cookies for a Cure of A-T (hosted by Loodles Desserts)- $3,250
  8. TeamConnor Disney Marathon Weekend (1/2017- an A-T Children’s Project fundraiser)- $7900