We met some of the new pioneers for Dravet Syndrome at the conference and have faith that they will be the ones who will be coming up with new ideas that will shape our future. It was incredible to have such wisdom at the IDEA League conference and have a look at the past and future of Dravet Syndrome. There is a long ways to go. Perhaps there will not be a cure in Cole's lifetime. Embracing that we are high maintenance, and that it's okay...one of my favorite things from the conference; we can pull together and make a difference. Please take the time every day to Vote For Hope. You can click on this link. The Global Genes Fund would help research for rare diseases, including Dravet Syndrome. You can vote everyday. If we win, it could mean hope for a lot of our friends. Money is hard to come by for something that only affects 1,000 people in the world. Please Vote For Hope.
Thursday, September 9, 2010
Hope
We have hope that in Cole's lifetime there will be strides for new information relating to sodium-channel related disorders. Even though Dr Dravet is technically retired, she is still fighting for these kids. We were honored to meet her.
We met some of the new pioneers for Dravet Syndrome at the conference and have faith that they will be the ones who will be coming up with new ideas that will shape our future. It was incredible to have such wisdom at the IDEA League conference and have a look at the past and future of Dravet Syndrome. There is a long ways to go. Perhaps there will not be a cure in Cole's lifetime. Embracing that we are high maintenance, and that it's okay...one of my favorite things from the conference; we can pull together and make a difference. Please take the time every day to Vote For Hope. You can click on this link. The Global Genes Fund would help research for rare diseases, including Dravet Syndrome. You can vote everyday. If we win, it could mean hope for a lot of our friends. Money is hard to come by for something that only affects 1,000 people in the world. Please Vote For Hope.
We met some of the new pioneers for Dravet Syndrome at the conference and have faith that they will be the ones who will be coming up with new ideas that will shape our future. It was incredible to have such wisdom at the IDEA League conference and have a look at the past and future of Dravet Syndrome. There is a long ways to go. Perhaps there will not be a cure in Cole's lifetime. Embracing that we are high maintenance, and that it's okay...one of my favorite things from the conference; we can pull together and make a difference. Please take the time every day to Vote For Hope. You can click on this link. The Global Genes Fund would help research for rare diseases, including Dravet Syndrome. You can vote everyday. If we win, it could mean hope for a lot of our friends. Money is hard to come by for something that only affects 1,000 people in the world. Please Vote For Hope.
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