It’s that time of the year again where the Landheer and Workman family gear up for the annual Great Strides Walk to Cure Cystic Fibrosis! While the actual walk will not be taking place this year due to ongoing pandemic, we still have some exciting news we wanted to share with you!
As most of you know, Mitchell and Jessi both have a disease called Cystic Fibrosis, a life-threatening genetic disease for which there is not a cure. This disease affects our lungs, digestion, and life expectancy. Mitchell (26) and Jessi (31) were diagnosed 25 years ago, and each and every day we commit our lives to fighting this disease. CF research has produced some incredible maintenance-related drugs that have contributed to the overall life expectancy, increasing from 1 year of age in the 1950s now to OVER 40 years old! Our goal is to help find a cure for this disease, so that CF will not stand for “Cystic Fibrosis” but “cure found”!
Jessi has thankfully had another healthy year. She is going into her fourth year of working as a Volunteer Coordinator for Spectrum Health Hospice, now working consistently from home. She has continued to work to balance her health with her busy life with two young children. Thanks to the new medication, Trikafta, she has been able to to drastically reduce the amount of time she typically spent on breathing treatments!
Mitchell has continued his career as an auditor for BDO USA in Grand Rapids. This past year has been a great one, and hospital-free. He was provided an opportunity to join the Cystic Fibrosis Foundation Board for the NW Ohio-Michigan Chapter as their Outreach Chair. This has been a joy for him to be able to help and give back to the foundation that has fought against this disease for so long.
For 65 years, the Cystic Fibrosis Foundation has been striving toward their mission to cure cystic fibrosis and raise awareness for this rare, genetic, life-shortening disease that makes it difficult to breathe and adds hours of daily therapies to maintain a normal life. Nearly every approved CF drug therapy available now has been made possible because of the Foundation and it’s supporters. It’s inspiring to think back 25 years ago when Mitchell and Jessi were first diagnosed to see how much progress has been made in the daily therapies and medication they take. A year and a half ago, a new drug came out, called Trikafta. Mitchell and Jessi have both been taking this medication since January 2020 and the results from this therapy cannot even be expressed through words. Both of their lung functions continue to improve dramatically, they have seen some of their symptoms disappear, and their strict treatment regime has been reduced to a much more manageable schedule. This new drug has literally changed the trajectory of their disease and their life. We thank all of the support we receive year to year, but we truly mean it when we say that to see this drug work miracles before our eyes would not be possible without the donations, prayers, and support from each of you every single year.
This year the Great Strides Walk sadly will still not be happening in its usual manner due to COVID-19. With that being said, it is not to say that we still aren’t going to celebrate what continues to happened within the CF world and we would like to ask you for a special favor of a contribution that will help support the research of the Cystic Fibrosis Foundation to bring us one step closer to a cure.
As articulated above, the CF Foundation is a very efficient organization and more than 90 cents of every dollar raised is used to support research, care, and education. Checks can be made payable to the Cystic Fibrosis Foundation and we have enclosed a self-addressed envelope for your convenience. We just want to thank you in advance from the bottom of our hearts. Words cannot express what your love and support mean to our family!
Love, Mitchell and Jessi (And of course, the rest of our tribe: Dave, Pam, Ben, Malory, Nathan, Jon, Nita and Jayden)
Due to the COVID-19 pandemic, indoor events sponsored by the CF Foundation are strictly prohibited at this time. Scheduled outdoor events must adhere to strict requirements to minimize the risk of COVID-19 infection. Events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
IMPORTANT NOTE ON ATTENDANCE AT OUTDOOR FOUNDATION EVENTS:
To minimize the risk of COVID-19 infection, attendees at CF Foundation events must adhere to the following requirements:
Practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household at all times
Face masks strongly encouraged and expected to be worn in accordance with local guidelines. (Note, children under two years of age should not wear masks due to safety concerns and therefore should not attend CF Foundation events where there is risk of interacting with someone outside of their household.)
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow.
Persons with CF should consult their physician before participation in any in-person event as they may be at an increased risk for severe illness from COVID-19. People with CF should maintain a safe 6-foot distance from persons outside of their household at all times.
FOR YOUR SAFETY AND THE SAFETY OF OTHERS:
For the health and wellbeing of the CF community, those eligible to be vaccinated are required to be fully vaccinated to join us in-person for the event. If you are not fully vaccinated, we invite you to participate virtually if that option exists.
We do not plan to ask for you to provide proof of vaccination. We are, however, counting on the fact that you appreciate the potential consequences of exposing members of the CF community to COVID and will abide by this requirement.
We cannot guarantee that all people in attendance at the event, including participants, sponsors, volunteers, and vendors, have been fully vaccinated.