My Great Strides Story
Robyn Cordes
Fundraising for Peace Valley Park Great Strides
Robyn Cordes
It's our 24th Great Strides Walk!!!
Every year we have walked and hiked to celebrate Megan and the quest for a cure. Our beautiful daughter is now 23 years old. She graduated from Emerson College last May with a degree in Theater Performance and Education and will have an exciting life to look forward to - largely due to the research and treatments funded by CFF and your donations over the years. She is right now getting her certificate in teaching back in Boston again and is really finding her passion.
We have participated in Great Strides and various other fundraising efforts since 2002 after Megan was diagnosed with this devastating genetic disease at birth and Megan has been fighting ever since. Megan has never let her disease limit her. When she was diagnosed back in 2001, treatment included multiple breathing treatments a day, several pills each day and strict nutritional needs for this multi organ disease which led to a feeding tube for over 15 years. In addition, she saw a team of specialists four times a year when she wasn’t in the hospital.
Fast forward from that first walk 24 years ago and you can see CF treatments are completely different and vastly improved. Over four years ago, Megan started the long awaited drug, Trikafta (and now soon to start the newest modulater, Alyftreka) versions of gene modifying medications. If you follow us on social media, we announced the day she started Trikafta - her lungs immediately cleared out. She said she didn't even know she couldn't breathe well. Since then, Megan has gained healthy weight on her own and improved her lung function. Over five years ago she was finally able to have her feeding tube removed, something she has had since she was a toddler. Megan continues some of her maintenance care and medications, but it is likely over time even that will change. Life expectancy has gone from 32 years old when she was born, to over 63 years and we know that will continue to increase so that Megan will have a long, full life. We cannot believe how close we are to a cure. But it is NOT a cure, there is NO remission, so we continue to fight. In addition, there are many others with different variations of CF that the new medications do not work for - people who are working and fighting right alongside of us. We owe it to these families to make sure there are treatments for everyone and eventually a cure for all!!!!
We have committed to raising funds every year for this cause so near to our hearts and are asking for your help again in raising support for research to cure this deadly disease. We hope you will join Team Meggers and help raise funds. It's easy, it's fun and it will continue to save Megan's life and give her hope for a cure one day. There are treatments and drug therapies that have changed the outcome of this once deadly disease. Our continued efforts will make Megan's life long and full. Please consider making a donation to the Cystic Fibrosis Foundation or joining Team Meggers today.
Together, we can make a difference in the lives of those with CF like Megan. Last year we raised over $10,000 through this event and our local foundation, BCCFA (Bucks County Cystic Fibrosis Foundation). Thank you for supporting the mission of the CF Foundation, BCCFA and the effort to find a cure for all with Cystic Fibrosis! But more importantly, thank you for praying and being with us as we have watched Megan grow and become a young woman. Help us find a cure soon and be part of Team Meggers today! Thank you.
Every year we have walked and hiked to celebrate Megan and the quest for a cure. Our beautiful daughter is now 23 years old. She graduated from Emerson College last May with a degree in Theater Performance and Education and will have an exciting life to look forward to - largely due to the research and treatments funded by CFF and your donations over the years. She is right now getting her certificate in teaching back in Boston again and is really finding her passion.
We have participated in Great Strides and various other fundraising efforts since 2002 after Megan was diagnosed with this devastating genetic disease at birth and Megan has been fighting ever since. Megan has never let her disease limit her. When she was diagnosed back in 2001, treatment included multiple breathing treatments a day, several pills each day and strict nutritional needs for this multi organ disease which led to a feeding tube for over 15 years. In addition, she saw a team of specialists four times a year when she wasn’t in the hospital.
Fast forward from that first walk 24 years ago and you can see CF treatments are completely different and vastly improved. Over four years ago, Megan started the long awaited drug, Trikafta (and now soon to start the newest modulater, Alyftreka) versions of gene modifying medications. If you follow us on social media, we announced the day she started Trikafta - her lungs immediately cleared out. She said she didn't even know she couldn't breathe well. Since then, Megan has gained healthy weight on her own and improved her lung function. Over five years ago she was finally able to have her feeding tube removed, something she has had since she was a toddler. Megan continues some of her maintenance care and medications, but it is likely over time even that will change. Life expectancy has gone from 32 years old when she was born, to over 63 years and we know that will continue to increase so that Megan will have a long, full life. We cannot believe how close we are to a cure. But it is NOT a cure, there is NO remission, so we continue to fight. In addition, there are many others with different variations of CF that the new medications do not work for - people who are working and fighting right alongside of us. We owe it to these families to make sure there are treatments for everyone and eventually a cure for all!!!!
We have committed to raising funds every year for this cause so near to our hearts and are asking for your help again in raising support for research to cure this deadly disease. We hope you will join Team Meggers and help raise funds. It's easy, it's fun and it will continue to save Megan's life and give her hope for a cure one day. There are treatments and drug therapies that have changed the outcome of this once deadly disease. Our continued efforts will make Megan's life long and full. Please consider making a donation to the Cystic Fibrosis Foundation or joining Team Meggers today.
Together, we can make a difference in the lives of those with CF like Megan. Last year we raised over $10,000 through this event and our local foundation, BCCFA (Bucks County Cystic Fibrosis Foundation). Thank you for supporting the mission of the CF Foundation, BCCFA and the effort to find a cure for all with Cystic Fibrosis! But more importantly, thank you for praying and being with us as we have watched Megan grow and become a young woman. Help us find a cure soon and be part of Team Meggers today! Thank you.
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