What You Can Do to Bring a Season of Hope and Joy

With just a few days remaining before Christmas, not much has changed this year in the search for a cure for pulmonary fibrosis (PF). Scientists continue to pursue theories searching for a clue that will lead to a cure or even more effective therapies. But even research that does not produce a new therapy or a cure is valuable for the data it does offer. There is a theory in science that has not yet been discovered. It is what we have all been waiting for.

Shortly after my diagnosis of idiopathic pulmonary fibrosis, I began participating in the Pulmonary Fibrosis Foundation’s (PFF) annual awareness walks. One of the hallmarks of the PFF walks is a sign each participant can carry. It is preprinted with the phrase “I walk for _____.” Many list the name of a loved one or a friend. Mine reads the same each year: I walk for a future generation without PF!

I walk for a future generation without PF! Yes, I dyed my hair blue. (Courtesy of Sam Kirton)

Today, even with multiple anti-fibrotic therapies, the possibility of a cure remains elusive. Even so, the search for a cure or new therapies continues without fanfare. If you are a part of a clinical trial, whether it’s interventional, observational, or another type, you are an integral part of the search for a cure.

Personally, I have participated in both interventional and observational trials. I know and accept that what I have done during my journey will not likely benefit me. Maybe it will benefit my children, grandchildren, or a niece or nephew. Perhaps it will benefit you or someone you love.

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Our role in promoting hope and joy

The days of December are some of my favorite ones of the year. They inspire childlike wonder and bring joy to the eldest among us.

For me, this joy also amplifies hope — hope for a Christmas miracle for the pulmonary fibrosis community. I embrace hope.

I look at the number of clinical trials relevant to PF and am hopeful. The need for the PF community — both patients and caregivers — to be involved continues to grow. Increased awareness about clinical trials will help lead more people to be involved.

Bionews Clinical, a division of the parent company of this website, hosts its own website to provide information about clinical trials. The Bionews Clinical site can also help you find the right match for a clinical trial. The U.S. government also manages a searchable database of clinical trials.

Participating in a clinical trial increases hope for all of the PF community. Identifying the right clinical trial for you is not as difficult as it once was. Using the tools above, you may find an immediate match, or in some cases your information can be stored in the event a suitable match becomes available.

Patients have a role in hope. Researchers want to unravel the mystery behind PF. In order for research to be conducted, especially clinical trials, patient participation is required. Clinical trials require a specific number of participants for each phase of the trial. If you search the U.S. government database of IPF clinical trials, each lists the estimated enrollment. If a trial is still recruiting, then the number of participants has not been reached. These trials are your opportunity to be a part of the solution that provides hope.

I walk for a future generation without PF! The hope of a cure brings me joy. Prior to my bilateral lung transplant in July 2021, I volunteered for every study and trial that I was eligible for. Perhaps my participation provided an important data point to further the study or trial. I must do my part to make every breath count.

Feeling overwhelmed or in an emotional crisis during the holidays? In the United States, call or text 988 to reach mental health professionals 24 hours a day, seven days a week. 

Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.