![\"\"](\"https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2020\/03\/image006-300x206.jpg\")
Meghan Waldron is a freshman at Emerson College with progeria, one of the world’s rarest diseases.\u00a0 SUZANNE KREITER\/GLOBE STAFF<\/p><\/div>[\/et_pb_text][et_pb_text admin_label=”Globe content” _builder_version=”4.3.4″ background_size=”initial” background_position=”top_left” background_repeat=”repeat”]<\/p>\n
In many ways, Emerson College freshman Meghan Waldron seems like a lot of students in Boston. She adores pop star Ed Sheeran. She loved the latest film version of \u201cLittle Women\u201d and wants to see it 10 more times. She had a great time backpacking alone in Europe over the summer but conceded her parents were \u201cprobably freaking out.\u201d<\/p>\n
She also has progeria, one of the world\u2019s rarest diseases. The fatal genetic disorder causes premature aging and has been identified in only 169 children and young adults alive today worldwide, although researchers estimate that as many as 400 have it. Most children with progeria die of hardening of the arteries, a common killer of the elderly, at an average age of just 14.<\/p>\n
Waldron has already lived considerably longer \u2015 she turns 19 on March 1. She credits lonafarnib, an experimental medication she\u2019s taken since 2007 in clinical trials at Boston Children\u2019s Hospital. A California drug firm plans to complete its application for approval by March 31, with the hope of a favorable ruling from the Food and Drug Administration by year\u2019s end. It would be the first approved drug for the ultra-rare disease.<\/p>\n
\u201cIt\u2019s been proven that it helps in extending life,\u201d Waldron, a Deerfield native, said recently over hot chocolate at Caffe Nero near Emerson. \u201cI\u2019m almost 19. The life span is technically 14.\u201d A winsome smile brightened her face.\u00a0\u201c<\/strong>Looks like it\u2019s doing a good job.\u201d<\/p>\nSince 2007, Children\u2019s Hospital has run four clinical trial of lonafarnib. Waldron has participated in all four, and researchers say the results are encouraging.<\/p>\n
In perhaps the most compelling finding, a study published by the Journal of the American Medical Association in 2018 reported that children with progeria who took lonafarnib capsules twice a day had a dramatically lower mortality rate than those who didn\u2019t.<\/p>\n
After slightly more than two years, one in 27 children who took lonafarnib, or 3.7 percent, had died compared with nine in 27 who didn\u2019t get it, or 33 percent, according to the article by a team of researchers from the Progeria Research Foundation, Brown University, and Children\u2019s Hospital. Lonafarnib appeared to slow the progression of cardiovascular disease, although it had little or no effect on other symptoms, including stiff joints, stunted growth, wrinkled skin, and loss of body fat and hair.<\/p>\n
\u201cThe data looks fantastic,\u201d said Dr. Leslie Gordon, lead author of the JAMA study and medical director and cofounder of the Progeria Research Foundation, the Peabody-based nonprofit that funded the trials. \u201cYou\u2019ve got a fatal childhood disease with no treatment, and you\u2019ve shown a survival benefit.\u201d<\/p>\n
For Gordon, a professor of pediatric medicine at Brown\u2019s medical school who practices at Boston Children\u2019s Hospital and Hasbro Children\u2019s Hospital in Providence, the quest to treat progeria is profoundly personal.<\/p>\n
Her son, Sam Berns, a Foxborough High School junior, died of progeria in 2014 at age 17. Like Waldron, he began taking lonafarnib in 2007 in the clinical trials. An avid sports fan who played the snare drum in the Foxborough High School marching band, he was the subject of the 2013 HBO documentary \u201cLife According to Sam.\u201d<\/p>\n
Gordon had never heard of progeria when Sam, her only child, was diagnosed with it at 22 months. She has since become an authority. In 2003, she was on the research team led by Dr. Francis S. Collins, director of the National Institutes of Health, that discovered the defective gene that causes the disease. She cofounded the progeria foundation with her husband and sister.<\/p>\n
The genetic mutation that causes progeria results in an overabundance of the protein progerin. A buildup of progerin occurs within a cell in normal aging, but the rate of accumulation is dramatically accelerated in children with the disease. Progeria has no effect on a child\u2019s intellect, as anyone who meets Waldron \u2014 who took an Advanced Placement class in European history in high school and rhapsodizes about Michelangelo \u2014 can tell in an instant.<\/p>\n
Lonafarnib was originally developed by the pharmaceutical giant Merck as a potential treatment for cancer. But researchers found that it can reverse an abnormality in cells of laboratory mice with progeria. Merck has licensed it to Eiger BioPharmaceuticals, a small drug maker in Palo Alto, Calif. David Cory, chief executive of Eiger, says the company has hired a chief commercial officer and a vice president of medical affair in anticipation of FDA approval.<\/p>\n
Researchers are working on other potential treatments, including one that targets the genetic root of the disease. David Liu, a chemistry professor affiliated with the Broad Institute, Harvard University, and the Howard Hughes Medical Institute, recently announced that he and a team of scientists had used a new form of genome editing to correct the DNA mutation that caused the disorder in mice, extending their lives.<\/p>\n
Waldron, who serves as an \u201cambassador\u201d for the progeria foundation, said she was diagnosed with the disease when she was about 2. Her mother, a housekeeper at an assisted living facility, and her father, a solar energy contractor, were worried because she wasn\u2019t growing or gaining weight, and her hair was falling out.<\/p>\n
Waldron realized she had progeria as an adolescent when she went on the foundation\u2019s website and saw pictures of kids who looked like her, she said.<\/p>\n
\u201cObviously, I knew that I was different before that,\u201d she said. \u201cBut it wasn\u2019t an awareness I-have-progeria thing until at a certain point.\u201d<\/p>\n
The disease has hardly stopped her. She ran for the cross-country and track teams at the public Frontier Regional High School in Deerfield. She played violin in the middle school orchestra and cello in the high school orchestra.<\/p>\n
She has met about a dozen other children with progeria from around the country at family weekends at the nonprofit Hole in the Wall Gang Camp in Connecticut for seriously ill children and their families.<\/p>\n
When she started considering colleges, Waldron said, she had no interest in going to school in Boston. But she fell in love with the city on a visit to Emerson.<\/p>\n
\u201cYou can walk down the street or hop on a train and go anywhere,\u201d she said, citing the North End as one of her favorites places.<\/p>\n
\u201cI have great friends,” she added. “I always have.\u201d<\/p>\n
Emerson has made several accommodations for her. For example, the college provides a stool for her to rest her feet on when she sits at a desk in her four classes. The handle on her wardrobe in her dorm room was lowered so she could reach it more easily.<\/p>\n
![\"\"](\"https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2020\/03\/image008-300x200.jpg\")
Meghan Waldron SUZANNE KREITER\/GLOBE STAFF<\/em><\/p><\/div>\nWaldron says she generally feels fine despite problems with her joints. She has dislocated her right shoulder four times doing ordinary tasks, such as reaching for a light switch.<\/p>\n
None of this has dimmed her spirit for adventure.<\/p>\n
\u201cMeghan has a very strong personality. She\u2019s driven,\u201d her father, Bill Waldron, said in a video posted last year on the progeria foundation\u2019s Facebook page. \u201cI don\u2019t think she pays attention to the fact that she has progeria.\u201d<\/p>\n
Indeed, after graduating from high school in June, she traveled in Europe alone for a month. The initial attraction was seeing Anne-Marie, a singer and occasional Ed Sheeran collaborator, perform in London. But Waldron decided she also wanted to experience Renaissance art. She visited Milan, Florence, Rome, Paris, and Dublin, staying in youth hostels along the way.<\/p>\n
Waldron\u2019s parents were nervous, she said. She was, too, but only briefly.<\/p>\n
\u201cThere was a point of about five minutes when my parents said goodbye and I was getting on the plane where I started freaking out,\u201d she said, laughing. \u201cBut then I was like, \u2018Oh, well.\u2019 And then I was fine.\u201d<\/p>\n
Comments:<\/p>\n
\n- What a remarkable young woman! I hope the medication gets approved. The world needs more people like Meghan.<\/li>\n
- Meghan, I have a feeling you will do more amazing things! What a wonderful story.<\/li>\n
- Meghan is awesome, what a great attitude and I am glad the medication is working so well. Many more bright years ahead to come for this Emerson College student!<\/li>\n
- You go girl!<\/li>\n
- Go girl!<\/li>\n
- Meghan, you are a fantastic young woman.
I hope that you have a great time in Boston while you are studying at Emerson.<\/li>\n - What a lovely young woman! May she have many more years of success and happiness. It is amazing what the medication has done. Kudos to Leslie Berns and the Progeria Foundation!<\/li>\n
- WOW Meghan. You are incredible and an inspiration! Best wishes to you and enjoy Emerson and Boston.<\/li>\n
- Another thanks to the Globe writers who make the effort to cover humanity!<\/li>\n
- Great story, great young woman. Wow!<\/li>\n
- God bless you young lady!<\/li>\n
- You are amazing and an inspiration.<\/li>\n
- I was pleased to hear how much she enjoys classical music and Renaissance art. There’s a lot to celebrate in life if we just look around us. Here’s to her next trip to Italy!<\/li>\n
- Thank you, Mr. Saltzman, for sharing Ms. Waldron’s inspiring story with us! What a lesson on living life to its fullest.<\/li>\n
- I’m sure all of us wish her much love and much more life to live and to enjoy! And if I’m privileged to see her, I’ll tell her “you truly are my hero!”<\/li>\n
- Here\u2019s a story we should all read and keep with us for those times when we\u2019re feeling like we have it tough.<\/li>\n
- I had exactly the same reaction. This young woman is an exemplar of strength, courage, and dignity.<\/li>\n
- And share with our children and grandchildren. Meaghan you rock!<\/li>\n
- Rock on, Meghan!<\/li>\n
- I remember Sam. A fine young man who left a hole in his community and school with his passing. His parents are tremendous people. Their profound loss, and the way they continue to choose to address it, is a big reason Meghan has lived to attend Emerson. I hope she gets to see the “Little Women” sequel and saves an empty seat for Sam.<\/li>\n
- You are so inspiring, Meghan! Here\u2019s to your drive and future achievements! Hoping the Globe will continue with updates on your story. So glad to know the drug has been successful, and hoping for many more medical breakthroughs ahead<\/li>\n
- And may God bless the medical and research professionals who captain Team Meghan.<\/li>\n
- God has a “special place” for Meghan when they meet each other in Heaven.<\/li>\n
- God bless her and best wishes to her! I hope she is with us for a very long time. I\u2019m sure she will do amazing things.<\/li>\n
- Never waste an empty seat. Fill it with love.<\/li>\n
- Hero.<\/li>\n<\/ul>\n
[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>\n","protected":false},"excerpt":{"rendered":"
On March 1st, PRF Ambassador Meghan Waldron turned 19, and we celebrated with\u00a0March Madness 2020:\u00a0Where in the world is Meghan Waldron?\u00a0We’ve shared photos from Meghan\u2019s\u00a0travels and hope they’ve inspired you to think about where your next adventure will be once we’re all able to travel again. Here\u2019s Meghan\u2019s article on the cover of The Boston […]<\/p>\n","protected":false},"author":2,"featured_media":9782,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"","_et_gb_content_width":"","footnotes":"","_links_to":"","_links_to_target":""},"categories":[3,1],"tags":[],"class_list":["post-9794","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-events","category-uncategorized"],"yoast_head":"\n
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