Between the 428 registered runners and walkers plus all of the gracious volunteers and Aquarion Water who were passing out reusable and recyclable water bottles, we had over 450 people! About an hour after the race, costume contest and raffle was over it started to rain. I couldn’t be more thankful to Hurricane Sandy for holding out and not ruining Rachel’s special day.
We have over $22,000 in the bank that we are going to donate to research once the donations stop flowing in! Thank you so much to our WONDERFUL friends and family and the community of Hull, Massachusetts for supporting our second race. It was an incredible day!
And a conversation about the road race and her Halloween costume!…
We have sent in the paperwork to have the 2nd Annual Team Rachel Road Race on October 28th, 2012 with a 9am race start. Cannot wait!!!!!!!!!! I promised myself to send the letter in for approval before her birthday and that is coming up soon (May 18th).
Picture: Rachel with a starfish given to her by another blind person that she and her Granny ran into at the end of Hull, MA…
I am reposting the “jist” of my speech here for those that were too far to attend or those folks who came but were way in the back…. Here goes:
My name is Kat von Tungeln and I am the proud Mother of 4 really great kids: Rachel is 11 and Julie London and Boston are 7 6 and 5.
About 3 years ago, and truly looking further back it was longer than that we noticed Rachel having difficulty with her short term memory and simple activities like planning out getting ready in the morning for kindergarten. After all was said and done and her symptoms progressed to crazy vision loss (I mean try to imagine your child going blind – it was truly an out of body experience for me) I finally got confirmation of her terminal diagnosis of Juvenile Batten Disease. In the most basic terms one of her chromosomes is a teeny teeny tiny bit shorter than it should be and as a result she has the inability to dispose of excess waste material in her brain and is causing Central Nervous System and Brain cell death. I won’t talk about down the road as my kids are only a few feet away from me but feel free to ask me any questions after you have done the race or email me at any time.
I am so grateful to the International Brotherhood of Electrical Workers Local #104 and to Clean Harbors for becoming Platinum sponsors. Julie Miller and Liza Collier really came through and thank you to our silver sponsors, your support has made all of the difference in our success.
I was expecting maybe 100, 125 to register and we have tremendously exceeded the 300 registrant mark.
Thank you to my Mom, Tami and Becca Petrocelli, Janet Donato, Mary Johnson, Briana Johnson (with one N), Sam Walsh, Jen Duran and my niece Haley for being a tremendous Assistant Race Director. Thank you to my brother Adrian and dad Andrew for helping get things set-up today, could not have done this without you!
I also want to thank my husband and kids for dealing with my insanity and absence these past couple of weeks. You guys mean the world to me.
This is a very nasty and unforgiving disease and I urge you to research it and share it with your friends because people like me and the families I am about to introduce to you are relying on private fundraisers to give the scientists the funds they need to help kids like Rachel. At this time I would like to introduce my local Batten Family and then we’ll be ready to roll with this race.
And if any of you Hull parents want me to have an easy to understand, kid friendly talk with your kids…. You know how to reach me.
Thank you so much for joining us today on our journey.
I am forever grateful. Now lets get ready to go. On your mark, get set <AIR HORN>
Here is a picture of Rachel and Granny after the race:
I plan to thank Clean Harbors and the IBEW #104 as well as my totally badass Team and everyone for coming out and donating. And briefly (since I have been told to be brief but precise) I will be mentioning and honoring all of the families who are joining us for race day and the boy in the next town over who died of Juvenile in 2002. Here is the list:
Curran: Fran & Glen of Duxbury with college age twin daughters who are unaffected and 19yo Nick (JNCL)
Daniak: Heather and Chris of NH with son Nicholas (LINCL) and William (unaffected).
Habershaw: Preston Habershaw passed away from JNCL in 2002 in Hingham, MA (next town over)
Landers: Nancy and Zia Landers of Cape Cod. Nancy’s son (Zia’s brother) Barry passed away (LINCL) in 1998.
Montville: Jessica of Worcester with daughter Nora (LINCL) and unaffected children Thomas & Alicia.
Stancombe: Maria & Mike of NH with affected (LINCL) daughter Gracie and son William died in 2010.
St Gelais: Moe & Jean of Westport MA with daughters Kelsey & Kate, affected (JNCL) sons Jordan and Zachary.
von Tungeln: Kat and John of Hull with children Julie, London and Boston and affected (JNCL) Rachel (11).…
Thank you to Steffensen, Fleming & Associates, LLC. for becoming a Silver Sponsor of Team Rachel! We appreciate their support so much!
Team Rachel is thrilled to have secured our fourth sponsor with Goodwin Graphics, a very reputable and long-term business in Cohasset, MA. They offer marketing solutions for small business!
Goodwin Graphics: http://cottonfeelsgood.com/…
Thank you to the DiVito Realty family for becoming our second sponsor for the road race. We so much appreciate the support of our cause and of our daughter Rachel.
DiVito Realty: www.divitorealty.com…
Many thanks to my Mom who created a new facebook event for our RACE FOR A CURE!
Please RSVP and share the event with your friends. Together we CAN raise $10,000!
Team Rachel is proud to announce that the Greater Boston Running Co has agreed to sponsor our first ever 4 mile road race (2 mile walk). They will be donating race day bags, race bibs and 2 gift certificates for our raffle or race prizes. We are thrilled that they stepped forward to help us.
Greater Boston Running Company: www.greaterbostonrunningcompany.com…