Reuniting Our Unique Family

Posted on July 30, 2021   |   

Nishant Gupta and Dawn Haugom.jpg

As COVID restrictions ease and family gatherings resume, many of us are overjoyed at the chance to reunite, in person, with those who are most dear to us. We have missed so much due to limited human contact over the last 18 months. We have felt this deeply within the LAM community, where in-person meetings have been on hold, and with them, the meaningful tradition of bringing scientists, clinicians, and LAM patients together.

A highlight of our in-person LAMposium conferences has always been the scientific awards, when patients can personally celebrate and thank the scientists and clinicians who focus their research on better understanding LAM. It is a joyful experience, a symbolic exchange that encapsulates the very essence of The LAM Foundation’s vision: to connect the people who are trying to treat and cure LAM with those who are suffering.

The patients and families, who have taken initiative to raise money for LAM research, are honored to be on stage handing an award to one of our scientists. The researchers in turn, are equally grateful and humbled to meet the patients and accept their award. For many, this may be their first interaction with a LAM patient. The energy of the evening is sincere and heartfelt because everyone is in it for the right reasons; the scientists are pursuing their passion and their careers to help the women who are living with this disease and who actually raised the money that is helping to fund their ideas.

(From left to right: Dr. Frank McCormack, Florence Lu, Dr. Vera Krymskaya, Patricia Ortiz, and Dr. Aristotelis Astreinidis)

Since 1996, the LAM Foundation has funded 148 grants totaling $11+ million for LAM researchers. These dedicated scientists are among the best of the best – a diverse group of talent, from post-doctoral researchers to established investigators with vast experience. They are exceptional in their commitment to treat and cure this rare disease. Why not specialize in a disease like breast cancer, or diabetes, that affects more people? Perhaps because with LAM, our scientists feel they have the individual ability to make a difference. Scientific research is a slow, painstaking, and often solitary endeavor. LAMposium is one of the few opportunities our researchers have to meet patients and see the possible results of their work. As researcher Issam Ben-Sahra says, hearing from families “motivates us even more and reminds us that people count on us to help them improve their lives.”

(The LAM Foundation Scientific Achievement Awardees in 2015, from top left to right: Dr. Yoshikazu Inoue, Prof. Koh Nakata, Dr. David Kwiatkowski, Dr. Joel Moss, and Dr. Kuniaki Seyama. From bottom left to right, Dr. Frank McCormack, Dr. Elizabeth Henske, Dr. Vera Krymskaya, and Prof. Simon Johnson.)

Many scientists return to LAMposium every year. They become truly inspired by this family of people who really care about each other: scientists, doctors, patients, and family members. At each conference, we invite and encourage early career scientists to attend, introducing them to the award process and hoping they will one day apply for awards, and expand new areas of research. I have tremendous gratitude for our entire network of scientists, especially our established LAM researchers and clinicians, who continue to grow and mentor this new generation.

As the leader of the Foundation that is deeply invested in our patient and scientific community, I want to emphasize the importance of continuing these connections while we are apart. We have three wonderful opportunities to do so in the coming weeks.

2021 LAM Research Virtual Conference – August 20, 2021, 11:00 AM – 2:00 PM ET

This workshop is designed for research and medical professionals focused on LAM. Patients and family members are welcome to attend the session; however, most of the content will retain a deep scientific tone.

The LAM Foundation Day of Giving Virtual Cocktail Hour – September 9, 2021, 7:30 PM ET

Join our entire community in a virtual reception for lively and personal conversations and stories, similar to how we gather in-person prior to the Breath of Hope Gala. This is a time for everyone to come together, celebrate our community, and stay connected.

The LAM Foundation Day of Giving Research Summary – September 9, 2021, 9:00 PM ET

Modeled after our “Sunday Morning Scientific Summary,” this engaging discussion will provide an overview and lay interpretation of the August 20 LAM Research Virtual Conference, for patients, family members, and friends. Don’t miss this chance to hear our scientific leadership share what current research trends might mean looking forward.

We also realize that over the past couple of years, more women have been diagnosed with LAM, yet have never even been invited to a LAMposium to meet our scientists and experience our warm and welcoming community. It is our intention and sincere hope that we will meet again in person for the 2022 LAM Research Conference and LAMposium. When we do, it will be more important than ever to welcome early career scientists and all our newly diagnosed patients and their loved ones. We are very much looking forward to bringing the family back together in 2022 or as soon as logistics and external circumstances permit.

(From left to right: Dr. Frank McCormack, Dr. Hilaire Lam, and Rebecca Nissly)

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