Canavan Disease Blog by Jacob’s Cure

Canavan Family Spotlight – March, 2011 – My Little Angel

March 1, 2011

(This blog is written by Karen Gonzaga, Daphna’s mom.) Daphna Adrienne was born on January 7, 2006. I still can remember the day I first saw my daughter, when I gave birth to her. It was the happiest day of my life, until I noticed that something was different about her. People around me were [...]

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A Coke and a Smile

February 2, 2011

Since Pepsi announced their guideline changes for causes that can enter their Refresh Contest – omitting health-related causes/advocacy groups like Jacob’s Cure – there has been an overwhelming response, leaving many people asking for a Coca Cola and forever boycotting Pepsi. Their statement in the Wall Street Journal that “health-advocacy… causes… didn’t always reflect the [...]

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How Canavan Disease Affects Our Children

January 18, 2011

(This was originally posted by Selina Galanis on Facebook and is reprinted here with her permission.) While working on the Jacob’s Cure Pepsi Refresh Campaign has felt wonderful because it is such a worthy cause, I must be honest and say that it has been difficult. Watching all of the videos of the beautiful children [...]

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Canavan Family Spotlight – December, 2010 – Our New Normal

December 2, 2010

(Ed note: This month’s family spotlight blog is written by Vinny’s mom, Kara Warden.) My son is Vincent Warden or if you prefer Vinny, Vince, Vincenzo or fat boy. He was born on September 9, 2003. Ten months later he was diagnosed with Canavan Disease. Yes, Vinny is non-mobile, non-verbal, 100% tube fed and has [...]

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This I Believe

November 19, 2010

(This beautiful essay was written by Izzy Brown for her 8th grade English class. Thank you, Izzy!!) What doesn’t kill you makes you stronger, this I believe. When Jacob’s family received word that Jacob had Canavan disease, Jordana, Jacob’s mother, was filled with many emotions. She was confused, and she did not know what to do with [...]

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Canavan Family Spotlight – November, 2010 – Lillana’s Odyssey

November 9, 2010

(This month’s family spotlight was written by Tiffany Kicherer, Lilliana’s mom. Follow them on Facebook here. They also sell beautiful hair bows and headbands to benefit a cure for Canavan disease.) For as long as I can remember, I wanted kids—a lot of kids. I love being around kids; in high school I took a [...]

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Wheels for Sarp

November 3, 2010

(Sarp, a Canavan child from Turkey, just got a new set of wheels thanks to the First Hand Foundation. His mom sent us the pictures and the note below. Earlier this month, Sarp’s mom wrote about his journey with Canavan disease.) We know that all we can do for Sarp is to make his life [...]

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Sarp’s Story

October 26, 2010

(Ed Note: Sarp and his twin brother turned two years old this past Saturday. Happy birthday, boys!! This post is written by their mom. They live in Turkey.) After three years of in-vitro trials we had our precious gifts, my twin boys, on October 23, 2008. After having a wonderful 15 days with our magical [...]

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Canavan Family Spotlight – October, 2010 – Happy 13th Birthday, Max!

October 6, 2010

(This month, our featured family is the Randell family. Their organization, Canavan Research Illinois, will be hosting its 12th Annual Canavan Charity Ball this Sunday, October 9th, in Deerfield, IL in honor of Max’s birthday. The post below is written by Max’s mom, Ilyce Randell. For more information about the event, you can view the [...]

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Letter from a Big Brother

September 22, 2010

I’ve had a rough life, or should I say rougher than most people. However, my sister has had the roughest. My name is Gary Swancey but my friends and family call me Coty. I have a sister that has a very rare disease that stops her from walking, talking and living a normal life. Sometimes [...]

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