About
The mission of A Toast to Carly is to raise funds to both eventually find a cure for the disease while also helping those living with this debilitating disease. Myotonic dystrophy is a long term genetic disorder that affects muscle function. Symptoms include gradually worsening muscle loss and weakness. Muscles often contract and are unable to relax. Other symptoms may include cataracts, intellectual disability, and heart conduction problems. Myotonic dystrophy is an autosomal-dominant disorder which is typically inherited from a person's parents. The disorder generally worsens in each generation.
A Toast to Carly has set up an Endowment with the University of Rochester Medical Center to fund clinical care for patients suffering from myotonic dystrophy and to support the research team who is working hard to find a cure.
There currently is no cure.
Carly Spinetto
A Toast to Carly was started in memory of beloved daughter, Carly Spinetto. Carly was born with myotonic dystrophy, and while it dictated the path her all-too-short life took, it never dictated the enthusiasm with which she lived her life. Her smile and mischievous giggle will always be remembered by her family and anyone who had the pleasure to meet her.
Despite the numerous surgeries and challenges throughout her life she remained consistently positive, had the sweetest laugh, and gave the best hugs. Her enthusiasm for singing and listening to music was one we could all learn from, and she loved movies, especially Disney princess stories. She passed away in 2013 at the age of 23—March 20th is her birthday, and we routinely host events near this day in celebration of her life and brave fight.
These events are intended to raise awareness of myotonic dystrophy and to generate funding in our fight against myotonic dystrophy.
Events
Virtual Wine Tasting Event
Featuring Douglas and Mary Danielak of Pont Neuf Wines
on December 6th at 6:00pm EST
A limited virtual opportunity to taste both old and new world styled wines, with the guidance of the winemakers themselves! Three tasting levels are available:
For a donation of $100 you will receive a 4 ounce pour of four wines including:
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2018 Pont Royal Chardonnay
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2018 Pont Marie Chardonnay
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2017 La Vouge Pinot Noir
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2017 La Source Pinot Noir
Please note - This option is intended for friends in the SC Hampton Hall community as the wine pours will be distributed on the day of the event.
For a donation of $200 you will receive two bottles of wine:
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2018 Pont Royal Chardonnay
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2017 La Vouge Pinot Noir
Shipment will be directly to you and you should expect to receive them around the 31st of October. You can join the virtual wine tasting event but will only be trying two of the four wines (though will have more of those two to drink).
For a donation of $400 you will receive four bottles of wine:
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2018 Pont Royal Chardonnay
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2018 Pont Marie Chardonnay
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2017 La Vouge Pinot Noir
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2017 La Source Pinot Noir
Shipment will be directly to you and you should expect to receive them around the 31st of October.
Donations for the event must be sent by October 18, 2020 so we have plenty of time to ship the wines and time for them to rest so they display their best qualities during the tasting.
During the event we will also be raffling four unique items. Tickets for the raffle are $25 for one, or $100 for five. Items include:
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Photograph of Carly’s Memorial Tree on metal donated by local artist Rick Locke
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2012, 2013, 2014 vertical of Handwritten Winery Napa Cabernet Sauvignon donated by Jack and Gail Millan
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2009 Joseph Phelps Bachus Oakville Cabernet Sauvignon bottle no. 9582 from the Spinettos’ cellar
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A signed magnum from Douglas and Mary at Pont Neuf
Please register for this event no later than October 18th, 2020. For more information or to register, please email redlippert@aol.com.
Donate
We accept donations via PayPal.
Checks can be made out to A Toast To Carly.
Tax donation forms will be mailed.
Contact
33 Torrington Lane
Bluffton, SC 29910