Canavan Disease Blog by Jacob’s Cure

Will The Ban on Stem Cell Research Funding Affect The Canavan Stem Cell Trial?

September 3, 2010

Last month, a federal court ruling prohibited federal funding for embryonic stem cell research. The ruling is currently being appealed, but in the meantime, many people have been asking what this means for the stem cell clinical trial for Canavan disease towards which Jacob’s Cure is currently working. Although $70 million in federally funded embryonic [...]

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The Global Genes Fund – To Help Bring New Money, Interest and Champions to the Rare Disease Community

August 11, 2010

(This article is written by Nicole Boice, Founder/President of the RARE Project, and was originally published on the Children’s Rare Disease Network Blog. I am reposting it here because I strongly believe that as a community we are stronger than any individual. By uniting, our voices can be heard. This partnership, although hard for many [...]

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Sibling Stories

August 6, 2010

(The article below is written by former NTSAD Intern Rebecca Ratner. I had the pleasure of sitting in on her sibling workshop when I attended the conference in March, and I was moved beyond words by what I experienced. Here is a small glimpse into the lives of children living with a brother or sister [...]

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FDA approves Geron’s Embryonic Stem Cell Trial For Spinal Cord Injury – Is Canavan Disease Next?

August 4, 2010

In its Friday press release, Geron, the California-based biotech, announced the FDA’s clearance to proceed with its embryonic stem cell trial for spinal cord injury. This will be the first clinical trial to test the use of embryonic stem cells in human patients, and it will have widespread implications for many other common and rare diseases, [...]

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A Hopeful Heart
Canavan Family Spotlight – August, 2010 – Benjamin Quinn

July 30, 2010

Benjamin Ragnar Quinn was born on October 12, 2001. His middle name is a tribute to the time we had spent in Scandinavia. When I was pregnant in Denmark, my husband would come home from the office and ask, “How is little Ragnar?” When he was born, he was a big beautiful baby and was [...]

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NORD Testifies Before the Senate HELP Committee

July 22, 2010

July 21, 2010 WASHINGTON DC—–An advocate for people with rare diseases today told a U.S. Senate committee that the burden of funding and driving research on rare diseases too often falls upon patients and their families. “As a society, it is wrong for us to expect people with devastating diseases to fund the search for [...]

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Chase Community Giving Contest – A Nonprofit Social Media Success Story

July 20, 2010

If you’ve been following Jacob’s Cure on Facebook or Twitter, you may know that we did not win the Chase Community Giving Contest last week. You may be wondering why the title of this post includes the word “success,” but I believe there is more than one way to measure success in a contest like [...]

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Chasing Moonbeams
Canavan Family Spotlight – July, 2010 – Lana Swancey

June 30, 2010

(Don’t forget that you can help Lana and all the other kids with Canavan disease by voting for Jacob’s Cure in the Chase Giving Challenge. Just click the button below and help us win $250,000) What I thought would be some of the happiest times for our family, the birth of our second and last [...]

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Living with Canavan Disease
Canavan Family Spotlight – June, 2010 – Dante Babayan

June 4, 2010

Written by Liana Karanyan (Dante’s mom): It is not a coincidence that Dante’s name means “Enduring, lasting….” He has endured so much more in his 3 years of life than many of us will for the rest of our lives. When we picked this name for him and we looked up the meaning, I thought [...]

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An Atypical Case
Canavan Family Spotlight – May, 2010 – Olivia Ferrandi

April 30, 2010

Written by Sasha Ferrandi (Olivia’s dad): Olivia Susan Ferrandi was born on October 20, 2008. At the age of six months, our pediatrician noticed that her poor head control warranted some follow-up tests with a neurologist. After numerous tests (blood work, urine samples, and MRI’s,) Olivia was diagnosed with a rare and fatal genetic disorder [...]

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