This is the letter I have been waiting to write for my entire life.
WE DID IT! We finally found a CURE FOR CYSTIC FIBROSIS! The Cystic Fibrosis Foundation has developed an incredible miracle pill that corrects the genetic defect that causes CF. Although this incredible medication called Trikafta came out too late for me (6 years after my double lung transplant), its incredible seeing other friends with CF enjoying normal lives, staying out of the hospital, maintaining normal lung function, and having babies!
It is with this wonderful news that I am joyfully announcing my retirement from the Cystic Fibrosis Foundation. Since age 3 I have assumed the titles of Poster Child, Volunteer, Fundraiser, Ambassador, Donor, Liaison, Speaker, and CF Warrior. I am so proud of the work that this Foundation has put in to make this cure a reality. I am so grateful to all of you, supporting me in all the ways over the years. WE DID IT! All our thoughts, prayers, donations, volunteer hours, fundraisers and walks contributed to this miracle.
The Cystic Fibrosis Foundation’s main goal is still in pharmaceutical development, one pursuit ensuring that there will be a version of Trikafta available to the small group of CF patients with “nonsense” mutations that do not respond to this new drug. It also recently announced a $1 billion initiative into the development of novel antibiotics to address the growing threat of antimicrobial resistance; and if you recall in the years leading up to my transplant, the issue of finding antibiotics strong enough to treat the superbugs I caught was one of life or death.
Since my double lung transplant in 2014, I have felt called to pursue a myriad of complementary and alternative whole medical systems, mind-body techniques, biologically based treatments, manipulative and body-based methods, and energy therapies, and have seen and felt incredible healing results. I have explored and continue to use Acupuncture, Meditation, Traditional Chinese Medicine, Herbal and Plant Medicine, Probiotics and Probiotics, Ayurveda, Yoga, Qigong, Acupressure, Biofeedback, Massage, Physical Therapy, Reiki, Mindfulness, Sound Healing, Reflexology, Plant-based Diet, and Trauma Healing.
The benefits I have seen include more energy, better sleep, a stronger immune system (despite still having to take handfuls of immunosuppressive medications each day), pain relief, increased strength, balance, and flexibility, reduced inflammation, stress management, and more peace overall. My pursuit of becoming a certified yoga instructor and reiki practitioner was in large part due to the incredible benefits I achieved through these explorations.
This pursuit of healing in all its forms began as a necessity, and has grown into a passion of mine. The average survival rate of transplant patients in my clinic at Johns Hopkins is only 6 years, yet even as I approach my 7-year anniversary, this number does not scare me. When I was very young and I first learned that the median age of survival for a CF patient was only 14 years old, and it was then that I learned how to transmute my fear into determination. That persistence has stayed with me my entire life, and long-term survival with these miracle lungs is my goal.
The Great Strides Walk that we have participated in for the last few decades is no longer an in person event due to COVID-19. So, to recognize the incredible achievement of Trikafta, pay homage to the foundation that dedicated themselves to extending the life of Cystic Fibrosis patients, and to celebrate all the blessings my newest chapter brings in, I am hosting two Park-Pop-Up Yoga events instead!
First, in my neighborhood park Holt Park: 34 Elmont Ave, Baltimore, MD 21206, I will host a fun, easy, relaxing yoga class on the day of the virtual walk Thursday, May 20, 2021 at 5:30-6:30 (FREE)
And finally, as a wrap-up event and true celebration of all the aforementioned achievements, a Yoga Happy Hour by the water in Gunpowder Falls State Park at Hammerman Beach: 7200 Graces Quarters Road, Middle River, Maryland, 21220 Thursday, May 27, 2021 at 5:30-Sunset (FREE + $3 cash entry fee into the park)
To support my final fundraising efforts, please come out to one of my yoga classes, and/or donate today to http://fightcf.cff.org/goto/colleenclary
Decades of Gratitude going out to each and every one of you, and your families. Thank you for helping us accomplish this incredible achievement of a lifetime together.
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.