Jenna Galvin
The CF foundation supports people with CF in many ways, from legal and insurance advice, to connecting people with needed grants. But the foundation spends all of its money on research. Research that has saved my life many times and funded the development of Trikafta which has made it possible for me to hear a little voice call me "mama".
But there are 2 problems with trikafta.
First, it is not a cure. I was recently reminded that my new found health is not as strong as I would like when a simple flu landed me back in the hospital like the "old days". Getting sick is still far more serious for me, and even when I'm well keeping up with a toddler is harder for me.
Second, it does not help everyone. Trikafta is mutation specific, meaning it only helps some of the CF population. Even people who's genetics suggest the can be helped do not always see the kind of benefit I do, or experience such extreme side effects that they cannot take it.
Kiesha does not have CF, but because I have 2 copies of the gene, she does carry CF. This could put her future children at risk if her future partner carries CF as well. I would love to be able to tell her "don't worry about that, if your kid has CF they will just cure it." But for that, research needs funding. At a time when scientific research is being slashed and NIH grands are being withdrawn, it is more important than ever to find the foundation so that we can keep moving forward.
Modulators are amazing, but we need a cure. For everyone!
Will you help us end cystic fibrosis?
By donating to my fundraising goal, you have the power to advance the research and science needed to drive our shared dream forward – a cure for everyone with CF.
But there are 2 problems with trikafta.
First, it is not a cure. I was recently reminded that my new found health is not as strong as I would like when a simple flu landed me back in the hospital like the "old days". Getting sick is still far more serious for me, and even when I'm well keeping up with a toddler is harder for me.
Second, it does not help everyone. Trikafta is mutation specific, meaning it only helps some of the CF population. Even people who's genetics suggest the can be helped do not always see the kind of benefit I do, or experience such extreme side effects that they cannot take it.
Kiesha does not have CF, but because I have 2 copies of the gene, she does carry CF. This could put her future children at risk if her future partner carries CF as well. I would love to be able to tell her "don't worry about that, if your kid has CF they will just cure it." But for that, research needs funding. At a time when scientific research is being slashed and NIH grands are being withdrawn, it is more important than ever to find the foundation so that we can keep moving forward.
Modulators are amazing, but we need a cure. For everyone!
Will you help us end cystic fibrosis?
By donating to my fundraising goal, you have the power to advance the research and science needed to drive our shared dream forward – a cure for everyone with CF.
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