Fundraising to find a cure for Cystic Fibrosis for our little man
View this email in your browser
What crazy times we are living in now. We are thankful for all of the first responders and those that are risking their lives to provide for their family during this quarantine. Fortunately, Jim has been able to work from home since beginning of May and my professional sabbatical was ideally timed. The kids are all surviving and hanging in there, although missing their friends, school routines and sports teams. We celebrated Dean's 10th birthday coronavirus style with Zoom calls and were so excited with everyone that stopped by to decorate, chalk the drive, drop off cards, small gifts, trading cards and the amazingly creative videos that were sent to keep him smiling. We are blessed by this village, this community of supporters who are rallying not only for a medical cure but also truly care about Dean's well-being. Thank you for making this a birthday to remember!!

This 3-minute video will give you absolute chills on the genetic-based therapies that could help the restoration and function of the CFTR protein for all those with Cystic Fibrosis, regardless of mutation. It outlines 3 different methods, mRNA, DNA Therapy and Gene Editing. I get the chills....I can't even.imagine...we just thank you for your support, love, prayers, donations, thoughts and ask that you to continue through to the end.  We are SO close and YOU are a part of this!

Fundraising in 2020

We would usually start planning the Chillin' & Grillin' for a Cure this month but unsure of the likelihood of gathering such a large group so reconsidered our fundraising options this year. We have some AWESOME opportunities for you to give (and maybe even get back). We have a lottery offering, a quarantine liquids basket and local restaurant gift cards, plus some supporters have shared their amazing ideas of how they can help us fundraise this year. Check out for all links to events/opportunities. One ends soon so check it out today!

Please keep our mission on your mind and in your hearts and thoughts and prayers as we continue to fundraise.  We don't want to pass up the opportunity to give a shoutout to our first 2020 sponsor, Twisted Taters. They reached out at the beginning of the year and we are so excited to have this awesome family on our side.
Share Share
Tweet Tweet
Forward Forward
On the medical front, Dean is on month 6 of a medicine called Symdeko, a modulator and corrector combo that helps reduce the symptoms of CF. While he doesn't have many day to day changes from this med, other than the addition of these 2 new pills, we are hopeful that the triple combo med that is currently in clinical trials for his age will complete soon. The COVID-19 quarantine has stopped his quarterly clinic visits at the hospital, the quarterly lung function and evaluation by his team of specialists. We should have also went for another blood test to make sure the new med hasn't negatively affected his liver enzymes but again on hold. One thing I have noticed though is how hot those masks are! Dean never enjoyed wearing them on a plane or at the hospital and now we all know too well what the doctors and nurses and all those that wear masks frequently feel like.

In the meantime, don't forget to check out the fundraising events where you can win too:
Want to change how you receive these emails?
You can update your preferences or unsubscribe from this list

This email was sent to <<Email Address>>
why did I get this?    unsubscribe from this list    update subscription preferences
Eat. Pray. Dean · CURECF · INDEANSLIFETIME, OK #1047 · USA

Email Marketing Powered by Mailchimp