The First Ever DADA2 Conference
Tax deductible
Dear friends, and friends of friends,
Last September, as many of you know, our two-year-old daughter Vanessa had a massive cerebral hemorrhage, and we came very close to losing her. We were incredibly fortunate — we live near the amazing Boston Children's Hospital, where the ER, neurosurgery, and ICU teams saved her life. Vanessa had been in and out of the hospital for months with a mysterious inflammatory condition, but the bleed surprised everyone. Her doctors worked quickly with the NIH on genetic testing and found the diagnosis: DADA2, or deficiency of the enzyme ADA2, a rare condition that causes systemic inflammation, childhood strokes, immune deficiency, and many other problems. She was only the 16th person to be diagnosed in the U.S. and the first at Boston Children's. Within 12 hours of her diagnosis, Vanessa had another bleed and more emergency brain surgery.
Again, she survived remarkably well. (And so did we, thanks to the enormous support we received from our friends, families, and coworkers.) Almost a year later, she is a happy, talkative, funny, and very tough little girl. Plenty of challenges lie ahead, but we feel like the luckiest family in the world.
The first article about DADA2 was published only a year and a half before Vanessa's first hemorrhage. We now know of over 80 cases in the world, and that number is growing quickly. It is a complicated, serious, and damaging disease, and there is a great deal we don't yet know about it. We joined forces with other parents to start a new nonprofit — the DADA2 Foundation — to raise awareness and support research into new treatments and, ultimately, a cure.
The Foundation's first project is an international conference, where doctors, researchers, and patients and their families from around the world will gather to share what we know about the disease and make a plan for future research. The conference will take place this November in Bethesda, MD, and it will be moderated by the Scientific Director of the Human Genome Institute at the NIH. More than 100 doctors from 15 countries have already registered for the event!
We are raising money to help pay for the conference and to cover travel costs for doctors and families who would not otherwise be able to attend, especially those from overseas.
Please help us reach our goal — we will be so grateful! Even a tiny donation will help. The DADA2 Foundation is a 501(3)(c) public charity, so your contribution is tax-deductible in the U.S. There's more information at dada2.org.
Thank you, thank you, thank you.
Katherine and Nancy
Last September, as many of you know, our two-year-old daughter Vanessa had a massive cerebral hemorrhage, and we came very close to losing her. We were incredibly fortunate — we live near the amazing Boston Children's Hospital, where the ER, neurosurgery, and ICU teams saved her life. Vanessa had been in and out of the hospital for months with a mysterious inflammatory condition, but the bleed surprised everyone. Her doctors worked quickly with the NIH on genetic testing and found the diagnosis: DADA2, or deficiency of the enzyme ADA2, a rare condition that causes systemic inflammation, childhood strokes, immune deficiency, and many other problems. She was only the 16th person to be diagnosed in the U.S. and the first at Boston Children's. Within 12 hours of her diagnosis, Vanessa had another bleed and more emergency brain surgery.
Again, she survived remarkably well. (And so did we, thanks to the enormous support we received from our friends, families, and coworkers.) Almost a year later, she is a happy, talkative, funny, and very tough little girl. Plenty of challenges lie ahead, but we feel like the luckiest family in the world.
The first article about DADA2 was published only a year and a half before Vanessa's first hemorrhage. We now know of over 80 cases in the world, and that number is growing quickly. It is a complicated, serious, and damaging disease, and there is a great deal we don't yet know about it. We joined forces with other parents to start a new nonprofit — the DADA2 Foundation — to raise awareness and support research into new treatments and, ultimately, a cure.
The Foundation's first project is an international conference, where doctors, researchers, and patients and their families from around the world will gather to share what we know about the disease and make a plan for future research. The conference will take place this November in Bethesda, MD, and it will be moderated by the Scientific Director of the Human Genome Institute at the NIH. More than 100 doctors from 15 countries have already registered for the event!
We are raising money to help pay for the conference and to cover travel costs for doctors and families who would not otherwise be able to attend, especially those from overseas.
Please help us reach our goal — we will be so grateful! Even a tiny donation will help. The DADA2 Foundation is a 501(3)(c) public charity, so your contribution is tax-deductible in the U.S. There's more information at dada2.org.
Thank you, thank you, thank you.
Katherine and Nancy
Organizer
Katherine Bell
Organizer
Somerville, MA
Dada2 Foundation
Registered nonprofit
Donations are typically 100% tax deductible in the US.