TheRaceForGrace.com

Hi Everyone!
I am still coming down from the high of Race for Grace 2008 but after reading the quote below from Dr. Huda Zoghbi, I don’t want to come down too far. I want to continue with my momentum of raising faith, funds and hope for a cure for Rett Syndrome. Sometimes I forget how devastating it actually is because I live with it every single day. I wanted to share the quote with you all in hopes that it will drive you to also continue to Race for Grace in every way possible whether it be educating someone about it, sending someone to the www.theraceforgrace.com, or offering a moment of prayer for Grace and all the girls who suffer and struggle to live with Rett Syndrome.
The disease is indeed a mystery. Why God allows the girls to suffer is also a mystery. Nobody knows when the cure will be discovered. What I do know is that Saturday, May 23, 2008 was a tremendous outpouring of love, hope and generosity from friends, family and even tons of strangers who have now entered in the circle of Grace. People have called and written to tell me how much the day meant to them and their families and I am so thankful that the Reddingtons were not the only ones to walk away feeling such gratitude. Grace is truly a blessing. I have no doubt that God has a master plan for her and He won’t disappoint any of us in the end.
Thank you for all the generous donations, volunteer work, time and talents that you put gave so generously to the Race for Grace. More importantly, thank you for jumping onboard and being part of the journey and the Race for Grace. I hope it continues to be a part of your lives everyday as it is in mine.

“Rett syndrome is a devastating disease. Think about what it takes to function normally: You have to be coordinated, you must be able to think, you have to be able to communicate, and you need to move smoothly and with balance. The symptoms of other neurological diseases affect some of these functions but Rett syndrome affects them all.
It’s very hard not to be intrigued by this disease. We all are familiar with neurological diseases; I’m sure everyone has seen some one with epilepsy, or Parkinson’s disease, or bipolar disorder or schizophrenia. But when you see symptoms of all these diseases in one individual, you are struck by this. Rett syndrome is particularly heartbreaking because it develops after the child has already learned to walk, and perhaps even say a few words. To lose all that and gradually develop a symptom from almost every neurological disease in the book is quite mind boggling.”
Dr. Huda Y. Zoghbi
Professor in the departments of Pediatrics, Molecular and Human Genetics, Neurology and Neuroscience at Baylor College of Medicine.
Investigator at the Howard Hughes Medical Institute.
Source: http://www.hhmi.org/news/zoghbi20080530.html

God’s grace to you all…
Love,
Tara

Hey Hey..it’s me (with no voice left~but I can still use a keyboard!),
Another great day. I will keep updating via website regarding total funds raised but currently we’re hovering around $100,000- Amazing, isn’t it? There are still some contributions that have been promised and not yet received, so I will keep you posted. God was truly present yesterday. Everything was smooth, fun and the weather was an absolute “10.” Thank you to all who supported and attended. Please enjoy the links I am sending along from George Ross, an incredibly talented photographer who spent the day with us yesterday. All the photos you see are available to purchase and there are so many awesome shots of many people. As you can read, George is donating all his profit to the Race for Grace. Please check out the YouTube video that George had up and running last night!! Please forward this to all the people you know who attended and may be interested in purchasing some of the photos. I’ll keep you all posted…
Thank you George and…
God Bless Grace!!!

Click for the Race for Grace 2008 Professional Photo Galleries (can be purchased to raise funds for the Race for Grace)

Click for the Race for Grace 2008 YouTube slideshow

Dear Friends,
Just a quick update.
Heading to Boston Children’s Hospital tomorrow for a couple of days of EEG monitoring and some psychopharmacology consultations targeted at figuring out the source of Grace’s daily “brain pain”.
I can’t believe when we get home, we’ll be a week away from the Race for Grace! I continue to be astounded at the unsolicited support we get daily. People either contacting us to get involved or donate on a corporate and/or personal level. The businesses that want to get involved are contacting Race for Grace. They hear about it, feel it happening around them, and want to jump onboard.
I have also come to recognize that Race for Grace isn’t an event anymore. It’s a way of life. When you truly are a member of the Race for Grace, you recognize and appreciate all that is good in life. You learn to accept hardship but continue to hope and persevere. You begin to recognize the importance of faith and trust in God’s perfect plan. I see the effects of Race for Grace all over the place ~ even across oceans. Race for Grace will change you forever and you will always have GRACE in your life. Thank you for sharing it all with us.
~Tara

Hi there Friends of Grace,
I haven’t written since my kickoff email. I guess my mood came across somber in that last email but on the contrary, lately, I’ve been feeling very positive about the Race for Grace. I wasn’t sad after the kickoff meeting fizzled…I became re-focused. My focus shifted off the dollars and onto Grace and the celebration of her life and her work that is so vital in our world and society.
Over the past 20 months since her diagnosis, so many people have reached out to support David and me and our children. Many of you have sympathized with the chaos of our family and have offered to baby-sit and help us cope with our tumultuous life with Grace. Well, David and I have gotten renewed energy as we have been able to refocus on Grace - refocus on HER struggles, HER life, HER pain, HER cries… We realize that compared to her, we have nothing to moan about. When I am tired, I think of Grace and how tired SHE is. When I don’t feel like cooking dinner, I think of how much Grace needs the nutrition and when I want to walk (or run) away from my life (for those moments when it seems to much to bear), I think of Grace and how she won’t give up or give in to her suffering. How that child can muster up a smile after 45 minutes of screaming is incredible to me. She doesn’t harbor anger, bitterness or resentment over what life has handed her. She keeps going. She keeps smiling and she keeps loving. She is AMAZING. She is the hero in all this. Grace is the reason why the Race for Grace is so successful.
The Race for Grace is in 3 weeks. Donations are coming in, auction and raffle items are piling up -even front row tickets to a RED SOX game have been donated!! By far, the most generous and heartfelt story is about a 13 year old lad in Ireland who heard about Grace from his young cousin Michael. Michael is ten years old. He lives in Rhode Island and found out about Grace, insisting to his mom he wanted to get involved. He wanted to meet her in person and his mom brought him over. She told me he was over the moon at having met her and see her face to face. He organized a bake sale at his school and he stood before his sixth grade superiors to present Race for Grace and Rett Syndrome to be considered for a dress down day. Well, Michael was in Ireland last month visiting his cousin who was celebrating his confirmation. Michael did such a job of “talking up” the Race for Grace, at the end of the day, his 13 year old cousin reached into his pocket, full of confirmation money and pulled out $100 (euros) and gave it to Michael for Grace.
I was completely astounded to learn of this young boy’s generosity. Not only does he live in another country but he selflessly gave up money that had spent only a few hours in his pocket and could have been spent on countless 13 year old pleasures. The unsolicited donations, phone calls and offers of help from all over have been plentiful. “There’s just something about Grace” is a phrase I have heard many times. I’m obviously not the only one that feels that way because most of you have been added to this email list because you’ve seen or felt “that something” for yourselves.
Race for Grace 2008 is going to be phenomenal. We have met so many new people over the past year and the whole town is buzzing about the Race for Grace. We had only three months to plan last year’s event and it was so successful. People have told me to be cautious about my hopes for funds raised this year and to be honest, there is no way I could be disappointed whatever the final numbers are. Stories like Michael and his cousin fill me with such wonder and hope and gratitude that Grace can even travel across the Atlantic Ocean and touch a young soul. Thank you to Michael for bringing her with you to Ireland. Thank you to all of you for bringing her to your families, your co-workers, your friends, your children and your spouses. I know that so many of you carry Grace with you and when I look in her eyes, I’m sure she knows it too.
The donations will continue to come in and the Race for Grace will astound us once again not because we put so much effort into planning for our event, or coordinating committees, but because there’s just something about Grace and everyone that crosses her little path wants to walk along with her.
Thank you for all your continued prayers, energy and enthusiasm.
God Bless Grace and you too!!
Love,
~Tara

For Friends of Grace in Rhode Island ~ David, Grace, Kelly (Grace’s Godmother) and I will be on the Cox local access show “Tea with Marie” on Friday May 9th and Friday May 16th at 3pm, channel 13 talking about Grace, Rett Sydrome and the Race.
~Tara