IMPROVING THE LIVES OF ADULT CYSTIC FIBROSIS PATIENTS
ANNOUNCEMENT - October 15, 2024:
It is with a mix of satisfaction and sadness that Spiritus Project formally enters the final months of our ten-year journey. Spiritus Project was launched shortly after Jessica Link’s passing in early 2015 to achieve her vision of “reducing the stress and providing improved quality of life for adult CF patients” served by the UNC Adult Cystic Fibrosis Center.
As most will recall, Jessica’s vision was initially to make adult CF patients like herself more comfortable during the typical two-week hospital stay at UNC, while also providing a nice occasional evening out or tickets to an event. Our initial plan for assembling hospital admission bags with blankets, lotions, slippers, soap, toiletries and room fragrance for the frequently unplanned hospital stays quickly changed as we began to engage with and hear from these adult CF patients. It didn’t take long, as one of the first patients we helped was living in a car and in desperate need of help.
In addition to the hospital bags, we quickly began offering financial assistance for housing, utilities, food, transportation and other basic needs, and it took off from there. 2024 is our busiest year yet - we already have helped patients over 400 times with nearly $113,000 of financial assistance.
Along the way, health care professionals, friends, family, neighbors and business colleagues all pitched in to help make Spiritus Project a blessing to these patients and their families. Our annual golf tournament and silent auction primary fundraiser grew to raise a gross amount of over $100,000 annually with over 200 golfers, volunteers and Verdict Ridge staff attending. We were blessed with long-time event sponsors such as Lake Realty Lake Norman NC, Williams Custom Homes, Knox Law Center, Carolina Door Specialties, Apiture, Aspire Private Capital, Jay and Sheila Selle, Datasite and others. Each year had a new theme, more activities, better food and beverages (thanks to an awesome tournament committee)!
We’ve seen a lot of change in this relatively short tenure. Along the way, Vertex Pharmaceuticals introduced the life-changing drug Kalydeco followed by various combination treatments that greatly improved the life expectancy and quality of life for our patients while reducing the frequency of hospitalizations. So, we adapted by reducing the focus on hospital bags and providing more funding to basic needs so patients could afford these new drugs. COVID-19 also impacted the focus as pulmonary-compromised patients were increasingly wary of hospitalization. Once COVID-19 subsided, our patients began asking for help with education, job expenses and family needs as their futures brightened.
We’re happy to see the stars align with Pete, Annie and the Filotimo Foundation. For over a year, we’ve discussed the transition from Spiritus Project to the Filotimo Foundation as Helen and I plan to slow down in our upcoming retirement years after nearly 40 years of engagement with this disease. We’re excited to see the passion Pete brings to this cause for both the items mentioned above and the addition of fertility support for patients of the UNC Adult CF Center. We intend to continue to support Filotimo, and hope you will also! By the way, mark your calendars for a big fundraising gala in May at the Angus Barn in Raleigh, NC for the Filotimo Foundation!
We will continue to accept patient requests for financial assistance through November 15, 2024 with the exception of UNC food/gas program. We will accept UNC food/gas requests through December 1, then spend the month of December wrapping up administrative and accounting items, and transferring any remaining funds to Filotimo.
In closing, some final thoughts. Astonishingly, with your help and support, the all-volunteer team at Spiritus Project will have helped patients over 3,000 times with a total of nearly $800,000 in financial assistance. That’s a LONG way from some nice hospital stay items and a few evenings out. That’s a lot of golf tournaments, silent auction items, Giving Tuesdays, Amazon Smile, and other fundraising activities, so we’d like to say thanks again to all the folks who helped out in ways both big and small! Big numbers, big impact – but it couldn’t have happened without your help! Helen and I are humbled by your support, time and donations on this journey, and think that Jessica would be pleased with all you have helped us accomplish!
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The purpose of the Spiritus Project is to provide various forms of direct, need-based financial assistance to adult cystic fibrosis patients in an effort to reduce stress and provide an improved quality of life. The focus of the Spiritus Project is to assist North Carolina-based cystic fibrosis patients whose primary care is delivered via the UNC Adult Cystic Fibrosis Center.
To date, we have now touched the lives of adult cystic fibrosis patients over 3,000 times since our founding in 2015. Some impacts were big, some were small, but all mattered!
Jessica Link noticed that small measures could have large impacts on the quality of life for fellow patients increasingly during her cystic fibrosis-related hospitalizations in her later years. Her compassion to create a better life for other adult cystic fibrosis patients led her to develop the concept for this project. She landed on "spiritus" as it symbolized both the painful reality of breathing with the unyielding optimism with which she faced life. Jessica believed in this endeavor so much that she acquired the personalized license plate "SPIRITUS" for her car.
In keeping with the theme of breath and spirit, Jessica often cited a quote attributed to Ralph Waldo Emerson:
To laugh often and much; to win the respect of intelligent people and the affection of children; to earn the appreciation of honest critics and endure the betrayal of false friends; to appreciate beauty, to find the best in others; to leave the world a bit better, whether by a healthy child, a garden patch, or a redeemed social condition; to know even one life has breathed easier because you have lived. This is to have succeeded.
It is with this background that we embraced Jessica's plan to improve the quality of life for her fellow adult cystic fibrosis patients. Jessica left this earth in early 2015, but her spirit and desire lives on with the Spiritus Project.
Breathe easy, Jessica!