Watch a day in the life with Cystic Fibrosis, our Roadmap to CF video, and more
Stepping back in time, that’s what it feels like to see what these Egyptian doctors have to work with in regard to medications. They have 4 vests for all 600 individuals with CF. In the U.S. usually each person with CF has a vest in their home. There are no CF modulators here (no Trikafta), it’s a dream for them right now. But these doctors are incredible, working to save the lives of these young children with this viscious disease. They don’t have the basics like vitamins, most of the patients suffer from malnutrition. When you watch the video you can see the transcript below if you need it. I love all these incredible people. They are hero’s. They are CF warriors. They are my people. xo
Dr. Sally Raafat Ishak “In Egypt now things are a little bit better than they were before, the creon is now on the label by the Ministry of Health, but the amount is still not sufficient to cover the needs of each patient daily. The hypertonic saline is now available, but we have the 7 percent instead of three percent, which is now available in the market. We still give the patient, the drug, but no added vitamins are still not available. And definitely the modulators are still far away from Egypt. We hope that they will be available in the near future to all of our patients.” Dr. Osama Taha Amir, Professor of pediatric pulmonology Zaga Zig University “ Our patient life expectancy is very short, young age. What, looking at the patient in Europe and America that live, almost normal life, they get to forty, they are very healthy. We hope that our children get this chance. We need them to get the modulator, we need them to get pulmozyme, to get every medication available to them. We need them to get the vest for every patient, not one vest for all our patients, no, we need vests for every patient. To get the best life. To live normal life.” Dr. Dina Tawfeek Sarhan, Assistant professor of pediatric pulmonology, Zaga Zig University, “The vest you donated will help our patients a lot. We are excited to start to use it on one patient and send you a video. I think we will be delight and our patients and you also. As the nutrition part, we don’t know what to do, we have the basics. Laura Bonnell asks: “From the United States to here, you’re at such a different stage, right? Dr. Mahitab Morsy Hussein, “Yes, yes, we are way behind. We are looking for to serving our patients in a better way. We are starting here our center of Excellence. The sweat machine is here. One year ago, we have used it. We have diagnosed a lot of patients, and we are aiming for more care, more better care. I know this is way behind, like in the U.S. But we are aiming better for our patients, and they deserve it.
Mohamed hates cystic fibrosis. We can relate. The Bonnell Foundation is grateful for his honesty. Mohamed’s 13 year old son is well thanks to the hard work and research by his Dad. You’ll enjoy his breathtaking honesty in this video.
Meeting Izraa, as you’ll see in this video, took me right back to diagnosis day. I began crying as soon as Izraa asked me if her 7 month old son would live. We hugged and couldn’t let go. I can’t speak Arabic and she can’t speak English, but there was no language barrier for us. We speak CF Mom. The video is very emotional.
I’m Laura Bonnell and I am in Egypt to deliver my daughters pediatric vests to the Egyptian CF doctors here. Check out the video.
Laura Bonnell is in Egypt with Stacey Fogerty Brown, U of M Dietician. The pair met Dr. Nasr in Cairo, Egypt to deliver vests donated by Bonnell’s daughters. Bonnell also received vitamins from a CF Mom and Creon (enzymes). The donations quickly were used.
Breakthrough cures for cystic fibrosis start by promoting science and innovation.
The Bonnell Foundation held their 2nd annual Night of Hope Celebration 2020 virtually to help raise money for families in need of medical assistance, lung transplant grants and college scholarships.
When the pandemic hit our country and Michigan most people were not stocked up on disinfectant wipes and other PPE. The cystic fibrosis community was scared because they regularly required N95 masks and PPE. We didn’t realize there would be a shortage, and panic set in.
This video is the story about how we found the PPE we needed.
This is the video of Emily getting the newly approved medication Trikafta that they have waited 24 years for. Emily’s Mom surprised her at an MSU tailgate with the new drug. Emily had no idea when it would arrive and she said she wouldn’t believe it until it was in her hand.
The Bonnell Foundation held their first Night of Hope Celebration in 2019 to help raise money for families in need of medical assistance, lung transplant grants and college scholarships.
Melissa Yaeger speaks at the Bonnell Foundation Night of Hope Celebration 2019. Her daughter, who inspired the movie “Five Feet Apart” (Claire Wineland), recently died at age 21 from CF.
Dylan Mortimer, 40 year old artist who had his second lung transplant in April 2019 speaks at the Bonnell Foundation Night of Hope Celebration 2019 about the trauma and joy of his CF journey.
Kevf (who has CF) entertains at the first annual Bonnell Foundation Night of Hope Celebration 2019 with some of his original songs spreading a message of love, hope and understanding.
The rain held out as the 2nd Annual Bonnell Foundation celebrity softball took place at Victory Park in Canton.
It was so much fun and we can’t thank Team Media and Law Enforcement enough. I have no idea what the final score was! At one point Law Enforcement was winning, then the media came back strong and we were tied 5-5. After that — everyone kept calling it a tie game! Honestly, I think we all won Saturday. It was a day full of love, friendship, compassion, selflessness, spirit and simply some amazing people who helped raise over $7,000 for the Bonnell Foundation. Each person on the team added something special: the largest amount raised, the most enthusiasm as a challenged player, help promoting this on the radio or TV, encouragement, donated mitts and a wonderful display of team spirit. Ya can’t beat that.
Everyone said they’d play again next year! SO…see you next year.
A huge thank you to Victory Park staff (Karen, Ann Marie and Drew) and to the Ump who donated his fee right back to the Foundation. Thank you Chuck Gossett. Thanks to State Farm Agent David Arce and Holiday Market for sponsoring the event.
Laura Bonnell and the entire Board
(Click on the link below to view game video shot by Emily Bonnell)
https://www.youtube.com/watch?v=yf4aVF5eja0 Alan Longstreet, Fox 2 News
https://www.youtube.com/watch?v=–yW1nd3tXw DPD Officer Adam Madera
https://www.youtube.com/watch?v=W1CfMperxhI Coop 98.7 Amp Radio
https://www.youtube.com/watch?v=TrQmH9p0rfA Detroit Arson Chief Charles Simms
https://www.youtube.com/watch?v=T5Gv5q4iUEw Agent Paul “Wisey” Wissmueller
https://www.youtube.com/watch?v=NLi4Z9hTWec Agent Wisey and Jeff Riger, 97.1 The Ticket
https://www.youtube.com/my_videos?o=U Law Enforcment
Detroit Tiger Justin Verlander surprises his biggest fan, Shayna Hersh, an 11-year-old with cystic fibrosis:
View a snapshot of a day in the life with Cystic Fibrosis:
EGT Printing of Troy, Michigan did a fabulous job printing our “Portraits of Cystic Fibrosis” calendars. Milcraft Group gave us a great price on paper. Bonnell Foundation donations covered paper costs. Yaffe Communications designed the calendar again this year. We can’t thank them enough for their generous donation of time and talent. Printing costs were paid for by the personal donations of Mark and Lillian Schostak.
Watch the printing of the CF calendars below: