Today we crossed the $75,000 mark of our $100K goal for our "Sing for Blair, Fund a Cure" campaign! We couldn't have done it without the generous donations and the time others have given to Blair (and our family!) in performance and prayer. Thank you from the bottom of my heart!
We are so thankful to Keith Harkin for taking time out of his current tour with Celtic Thunder Official to Sing for Blair. Please enjoy Keith as he performs a new single "Risk the Fall" from his recently released solo album.
I’ve heard it said that people "come into our lives for a reason” and I know that Benjamin Siedman came into our lives for a reason. Not only has his family helped us in our journey with Blair but his family’s foundation – The Sanfilippo Research Foundation( aka Ben’s Dream) definitely changed the landscape of Sanfilippo Syndrome research FOR GOOD. Two beautiful young singers, Cary Davis and Cat Claus performed ‘For Good’—a musical piece from Wicked at Ben’s memorial service in 2014. On the year anniversary of his passing(2/7) they came together again to remember Ben and the joy he gave everyone who knew him. Singing this time in honor and support of both Ben and now Blair, they are getting out the word that by funding a cure, we can change the world “for good".
In honor of the season kick-off of American Idol tonight, I wanted to share Emily Piriz's very FIRST single, "One of Those Nights" that she recently performed for Blair. So thankful to Emily, American Idol Season XIII Top 12 Finalist, for adding another wonderful performance to the Sing for Blair campaign!
Tomorrow is Blair's "sweet teen" 13th birthday. Every birthday is bitter sweet and this one even more so, with most Sanfilippo children not living past their teens. We have been so blessed with so many friends coming along our journey via "Sing for Blair". Wanted to re-post one of Blair's favorites of the campaign…Jimmy Buffett, who will celebrate his own birthday on Christmas Day.
In recognition of the Holiday Season, please enjoy this wonderful Sing for Blair tribute by Dr. John V. Sinclair and the Bach Festival Society of Winter Park. Dr. Sinclair is one of Florida’s most visible musicians. In addition to his work with the Bach Festival Society, Sinclair conducts the Walt Disney World Candlelight Processional at EPCOT (an annual delight for Blair and our family!). The auditioned all-volunteer Bach Festival Choir is the nucleus of the Bach Festival Society, with a membership of over 160 singers from all walks of life who share a love of great music. Thank you Dr. Sinclair and the Bach Choir for this wonderful gift of the Season!
We are so fortunate that the Boca Grande community has always treated Blair as one of their own with such love and care. Yesterday, one of Blair's champions, Kris Irving Boyden, organized a Sing for Blair performance of "You Are My Sunshine". Thank you to those who participated and the entire Boca Grande Community.
Last night the new Dr. Phillips Center for the Performing Arts held its first performance; an intimate concert by 12 time Grammy Award winner Emmylou Harris. Technically, the VERY FIRST performance was even smaller. Emmylou Harris graciously took time out of her sound check to pull up a chair and Sing for Blair, a wonderful and true story about her "Big Black Dog" Bella. As you can see, Blair in her cowboy boots enjoyed this unbelievable gift of music by an all time great, Emmylou Harris.
American Idol is one of Blair's favorite shows. She loves the dancing, lights and of course the singing! So thoughtful for Emily Piriz, American Idol Season XIII Top 12 Finalist, to contact us to Sing for Blair! She sang two songs for Blair including an original that we cannot post until it is released in early November, and she graciously answered all of Grey's (ok, Dad had a few too!) questions about being a contestant on Idol. So thankful to Emily and friend Deven Morone to take time out of their day and "SING FOR BLAIR"!
Friends, Today we crossed the $65,000 mark for money raised to CURE Sanfilippo Syndrome. Thank you. Here is a video of Blair enjoying one of her "Sing for Blair" performances, Rhetta Jane! To see more wonderful performances, just click "show all" on our page.
Please enjoy Emily Piriz (of American Idol fame) and Deven Morone as they Sing for Blair, performing "All About the Base". Emily also performed an original, her first single to be released soon! You will see it soon! We have had some of the biggest names in music "Sing of Blair", including Christina Perri, Jimmy Buffett, Sister Hazel & Davis Gaines. To see all of them click "show all" just below.
Blair's sister Grey has a favorite song, "A Thousand Years" by Christina Perri. The lyrics could be Grey's own words: "Time stands still, Beauty in all she is, I will be brave, I will not let anything take away, What's standing in front of me, Every breath, Every hour has come to this, One step closer…" Watch Perri "SING FOR BLAIR" as we we strive "one step closer" for a CURE!!
We have had some of the biggest names in music "Sing of Blair", including Christina Perri above and Jimmy Buffett, Sister Hazel, Davis Gaines. To see all of them click "show all" below the latest update. However, sometimes the smallest voices are the strongest (see video update below). Jonathan is 12 and was diagnosed with autism at the age of 2. He has known Blair since preschool. Jonathan can communicate verbally but has trouble expressing himself socially. Conversations are challenging for him. Music has always been his love. His ear for music is a great gift. He finds joy in singing and playing the piano. We are so thankful he is willing to share his talent and willingness to help another child in need as he "sings for Blair"!
What started out as friends and family "singing for Blair" has taken off to include such big names as "Before You Exit", "Sister Hazel", Davis Gaines and Jimmy Buffett! Just posted a compilation video of some highlights. Take a quick watch and feel the trajectory of YOUR efforts at the 1:40 mark of the video! Thank you to everyone for coming along our journey.
Blair is a true Florida Girl and who better to "Sing for Blair" than Jimmy Buffett!?! We have been so blessed with such wonderful support for our campaign to fund a cure for Sanfilippo Syndrome. So check out Jimmy Buffett as he performs "That's What Living is to Me"
Platinum recording artists and band, Sister Hazel, performs "All for You" for our Sing for Blair campaign. The lyrics are so true for Blair and other children with Sanfilippo: "Rain comes pouring down (Pouring down). Falling from blue skies (Falling from blue skies. Words without a sound, Coming from your eyes"
Sweet Abby Grace who also has Sanfilippo Syndrome "Sings For Blair". This has been a tough week for our Sanfilippo network of families, as we lost another little girl to this dreadful disease who was just 13. Our battle cry is "COURAGE". It's not "hope"…not yet. Why "courage"? Because we stand in the gap as an unrelenting, unfathomable storm barrels down on our children and families with no shelter in sight. You can help, donate today. All funds go to research.
More wonderful dedications: Above, Sue Fitzgerald "sings for Blair" and "sings for Ben" (another boy who lost his battle with Sanfilippo earlier this year), performing Shawn Colvin's "Twilight". And below, OSky (schoolmate of Blair's sister and friend of the family) performs her ORIGINAL "After the Rain". #Blessed
Performances for Blair keep streaming in...here are two: 1) Nicole Ponder sings an original, "Stronger Than You Know" and 2) 10-year-old Emma Kate Pastis performs "Roar". If you want to see Blair connect, these are both winners!
As a father of a child with a terminal illness, I may never get to experience certain things with Blair. To have the band, "Far Young" perform "All of Me" in honor of "Sing for Blair to Fund a Cure" sure brings a smile to this father's face. Thank you Far Young!
DAVIS GAINES performed the title role in Andrew Lloyd Webber’s "The Phantom of the Opera" over 2,000 times. The New York Times called him a "vocal Superman". Watch him "Sing for Blair to Fund a Cure" and you will understand his "super powers". Please SHARE!!
There is a rock anthem titled "School's Out for Summer". While most kids were celebrating the last day of school today, 12 year-old Luke McMahon decided he would he would celebrate by singing for a friend in need, performing "Say Something"…I WON'T GIVE UP ON YOU.
Luke and Blair Chapin were in the SAME pre-school class years ago. Today, Luke just completed 6th grade at Lake Highland in Orlando, while Blair is fighting for her life facing a terminal illness. Blair loves Luke and his music.
Blair Chapin was diagnosed with Sanfilippo Syndrome when she was five years old. She is now 12. Children with Sanfilippo have a life expectancy in their teens.
There is promising research and clinical trials starting in 2015. It will take millions of dollars to fund the trials and additional research. "Sing for Blair, Fund a Cure" will donate all proceeds to finding a cure. (forgive my audio taping skills..turn up your speakers!)
Ultra talented, generous, caring and emerging local artist Matthew Fowler "Sings for Blair" one of his originals, titled "Beginners". Great friend Giti Khalsa of "Seven Mary Three" fame arranged this bedtime "jam" session with Blair last night and backs up Matthew on percussion!
At the age of 6, our daugter Blair was diagnosed with Sanfilippo Syndrome. We were told she would slowly slip into the depths of the disease. First she would stop talking, become unable to feed herself, lose her ability to walk, then eventually her body would give up. We were informed her life expectancy is in her teens.
There is promising research and we are close to finding a cure. A cure that could help Blair and other children with Sanfilippo.
Blair no longer talks and she is unstable on her feet. Our day is designed around keeping her as comfortable as possible.
One thing that comforts Blair is music and songs. As a father, I've always wanted to "fix" Blair. It is a helpless situation. Instead, I sing to her. I'm hoping to find others...musicians, actors, athletes... to "Sing for Blair and Fund a Cure" before it is too late.
Please consider donating (100% for research) or "sharing". With every share or "like" we just might convince others to "sing for Blair"!
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