Posted on November 21, 2017 |
In early July, LAM Patient, Linda Grunberg received a much-anticipated call from the lung transplant program at the Hospital of the University of Pennsylvania (HUP), that it was her turn to receive new lungs. After living with LAM for nearly 20 years, she was certainly ready, “As a LAM patient, I've been coming to HUP for 19 years and had the utmost confidence that this would be the best place to have my transplant.”
Linda did all the necessary work to prepare for this day, including enquiring about how her LAM lungs could benefit other women with LAM, so they might avoid what she had to go through. “My daughter, Robyn, called The LAM Foundation to get as much information as she could,” Linda writes. Robyn spoke with Patient Services Manager, Anne McKenna, at The LAM Foundation who directed the family to the National Disease Research Interchange (NDRI). NDRI is a non-profit national tissue recovery network that connects medical research facilities to donor tissue. Linda took the time to fill out the necessary paperwork, giving specific instructions to her lung transplant team about her wishes to donate her LAM explanted lungs to LAM research. “It was quick and easy, I just filled out some paperwork. I gave everyone on my transplant team a copy of the paperwork before I received the call and brought a copy with me on the day of surgery.”
For scientists who study LAM, there is no more important resource than actual LAM tissue, which is only available from LAM patients who agree to donate their tissue from a hysterectomy, oophorectomy, pleurectomy, nephrectomy, biopsy or lung transplant. Jilly Evans, PhD, LAM Scientific Advisory Board Member and scientist who recently worked with live LAM cells at the Perelman School of Medicine says, “We work with this tissue immediately both to characterize the different potential protein targets for future LAM therapy and to help us understand the mechanism of LAM growth. We can then use the LAM cells to find ways to slow or stop them from dividing and damaging the lung.”
The annual number of lung transplants for patients with LAM is lower now than in years past, with just three sets of LAM lungs donated to LAM research so far in 2017. Sue Sherman, MHA, Executive Director of The LAM foundation points out, “While there isn’t any conclusive data, it is suspected that this is a result of the effectiveness of sirolimus, the only FDA approved treatment for LAM, as well as increased awareness of the disease, leading to faster diagnosis and treatment.” LAM Clinic Director, Lisa Henske, MD, from Brigham and Women’s Hospital adds this plea to women with LAM who may one day have surgery, “We need your help! Many of the research questions we need to answer require LAM tissue. Your donation of tissue (which would otherwise be discarded) can make a huge difference to LAM research. We especially need “fresh” tissue, obtained at the time of surgery or lung transplantation.”
Linda Grunberg shares, “I am one of the oldest living LAM patients, (72 years young) who has had a bilateral lung transplant. I am feeing amazing and I hope to live a long and healthy life.” The gift of new lungs means she will be healthy enough to spend more time with her husband, children and grandchildren. The gift of giving her old lungs to LAM research means accelerating LAM research. “Our laboratory is extremely grateful to all the women with LAM who have helped fast-track research, to benefit everyone living with LAM”, adds Dr. Henske.
If you have been evaluated for transplant, are on the transplant list or have other surgeries planned such as a hysterectomy, oophorectomy, pleurectomy, nephrectomy, or biopsy (You can also donate chyle), arrange to be a tissue donor today. Please contact Anne McKenna at The LAM Foundation by email at firstname.lastname@example.org or calling her at 877-CURE-LAM or 877-287-3526.