
This a letter I sent to most of my friend on February 25, 2009
The Precious Ava Guillet
Dear Friends:
I am so sorry that I have not been in touch as much as I should recently, there is no excuse! I hope all is well.
It is that time again! I am asking for your help and support for my beautiful grand-daughter, Ava.
The children and the grandkids are doing well. Michel, Natalie, Margaux and Nicholas have come to visit a couple of times. Marc, Dana, Samantha, Andrew and Ava are in California and came to New York last spring. Matt and Lisa are doing well in Sayville with their two dogs and their cat. Martin, Marie, Nicole, Marisa and Marc with their dog Bailey are having a lot of fun. At the end of March the four families are planning to visit Charleston. During that trip we are going to be doing two fundraising events for Ava who suffers from Nemaline Myopathy.
As many of you know our family started A Foundation Building Strength, a 501(c) (3), to raise awareness of this genetic disorder, which causes muscle weakness and early death in its most severe form. NM is such a rare disease that there are very limited resources available for funding treatment related research and supporting affected families. Recently, scientists have discovered mutations in 6 different genes as the primary cause of Nemaline Myopathy allowing efforts to be focused on making a positive impact upon those with the disorder. A Foundation Building Strength is actively supporting research grants targeted at the identification of treatments for NM. With contributions from last year's event, we have already been able to fund our first research grant! We hope to reach such goals this year as well.
-Visit my personal page and the information on the foundation www.buildingstrength.org http://nemalinemyopathy.kintera.org/faf/donorReg/donorPledge.asp?ievent=300462&supId=203584231
How you can offer your help and support:
-Make a visit to Charleston, South Carolina
•Join me for a fundraising dinner that I am throwing at McCrady’s Restaurant in Charleston on March 22nd, 2009 at 6pm. Many Chef’s that I have worked with over the past 45 years will be cooking an amazing dinner. The dinner is $125 per person (including food, wine & gratuity) and all of its proceeds will go to “A Foundation Building Strength.” If you are able to join me, please call me personally or the restaurant to make your reservation.
-Walk with us on the 2nd Annual Ravenel Bridge Walk as an awareness of Nemaline Myopathy on March 22nd, 2009 at 12noon. For further details, please call me personally.
-Continue to pray for Ava and our family.
-If you unable to join us, please help me reach my goal by using the donation space above.
Going south is putting me far away from everyone, but Charleston is a beautiful destination. Seventeen months in Charleston and it is becoming more and more my home. It is a lovely city, people are friendly. I think people here talk funny, but they keep telling me that I am the one who does. Charlestonians think traffic is bad and I find that amusing. They also think it is cold in the middle of winter when it is 60 degrees.
I love my apartment and the location. Mount Pleasant is only 20 minutes from downtown Charleston and it is very close to the beach, shopping etc.
McCrady’s restaurant is a great place for me to be at this time in my career.
Sean Brock, the executive Chef, a 30 year old young man teaches me more and more everyday. He is a passionate artist who works so hard. Sean started McCrady’s Farm and not only do we get most of our vegetables from it, but we are also raising our own pigs. Visit his blog at www.seanbrock.com. Sean has also made it to the semifinalists for the James Beard Foundation in two categories, “Rising Star Chef of the Year & Best Chef: Southeast.” The 2009 James Beard Foundation Award nominees will be announced on March 23rd and will be available on www.jbfawards.com. We have a great staff of people interested in their career. The front of the house and the back of the house are dedicated professional men and women who love what they do. You can also visit www.opinionatedaboutdining.com
My own blog, “Out of the Kitchen” has started, please check it out. Also, believe it or not, I am on Face Book!
I am blessed to have been assigned to Christ Our King parish in Mount Pleasant.
It is good place for me with great people around me. I enjoy helping people. The staff is great and the people care about me. Their web site is www.christourking.org.
Hope all is well with all of you, thank you for your patience with me. I hope to see or hear from you soon!
May God bless you in a very special way,
Andre