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ATTR cardiac amyloidosis: A retired pro football player tackles a new challenge
Pete Shaw plays offense against a progressive disease that can affect the heart
Pete is living with hereditary ATTR cardiac amyloidosis and taking AMVUTTRA® (vutrisiran). Pete was paid by Alnylam for sharing his story.
PHOTO CREDIT: ALNYLAM PHARMACEUTICALS
Pete Shaw, in many ways, embodies strength. He comes from a hard-working family, pushed himself to do well in school and earn a football scholarship, went on to the pros and became known as a big hitter. He turned that strong work ethic into his next career in finance, raised a family with unshakeable love, and shared his energy with the community through philanthropy. But all that strength was tested one day a few years ago when Pete collapsed to the floor struggling to breathe. It wasn’t the first sign that something was wrong.
“At first, I wrote the symptoms off as old football injuries and general aging.”
Years before, Pete noticed aches and pains in his joints, developed trigger finger, and had carpal tunnel syndrome that required surgery.
Over time, more symptoms appeared and advanced—neuropathy, ankle swelling, fatigue, and dizziness. “I noticed that Pete didn’t feel like himself; his energy level was low, and he would be out of breath just climbing the stairs or walking a good distance,” recalled his wife, Kari.
Though Pete knew heart disease runs in the family, he hadn’t considered that there might be a connection between his family’s medical history and the kinds of symptoms he’d been experiencing throughout his body. Like others, he chalked up his symptoms to aging and wear and tear. It wasn’t until the events that followed that critical day when he collapsed and had to call Kari for help.
Hospitalization and testing followed. Results showed that Pete’s heart was enlarged. His doctor suspected ATTR cardiac amyloidosis (also known as ATTR-CM). It’s an underrecognized and progressive disease that can be difficult to diagnose, with symptoms that frequently mimic more common conditions.1-7 The couple had never heard of it. “Kari and I looked at each other and said, ‘amylo-what?’”
“When I heard the diagnosis, I was overwhelmed because I didn’t know what I was up against.”
ATTR cardiac amyloidosis involves the buildup of TTR (transthyretin) amyloid deposits in the heart.8,9 This can cause the heart muscles to thicken, making it difficult for the heart to pump blood to other parts of the body.8,10 After initial testing confirmed Pete’s diagnosis of ATTR-CM, genetic testing revealed that he had the hereditary form of the disease, called hereditary ATTR, or hATTR. In Pete’s case, the cause was a gene variant called V122I. There are more than 120 gene variants associated with hATTR, in which a gene variant is passed down from parent to child.11-14 Having a gene variant does not mean one will develop the disease. Black families in the US are at risk of carrying the V122I variant, associated with African ancestry.12-14
Unlike in Pete’s case, ATTR misdiagnoses and delays in diagnosis are common.7 As Dr. Rajeev Mohan, the cardiologist who diagnosed Pete said, “ATTR is easy to miss because many times it affects other parts of the body before it gets to the heart. Things like musculoskeletal issues, carpal tunnel, spinal stenosis.7” Everyone’s experience will be different.
Kari is Pete’s wife and caregiver.
PHOTO CREDIT: ALNYLAM PHARMACEUTICALS
Pete and Kari found themselves dealing with the reality of life with hATTR, and learning that there was a 50% chance his sons could have the gene variant was incredibly painful.9,15
“Spreading awareness about this disease is important, and taking action to get answers is a step each individual has to find the courage to take.”
Pete is taking action toward managing his disease and creating awareness about ATTR-CM. Pete’s doctor prescribed AMVUTTRA® (vutrisiran)—a treatment for wild-type and hereditary ATTR-CM that is also approved for hereditary ATTR with polyneuropathy—with the goal of slowing the progression of this disease.7,16 Wild-type ATTR-CM, the more common form of ATTR, is a nonhereditary form of the disease that’s associated with aging.17,18
TTR, the protein that misfolds in ATTR amyloidosis, is made primarily in the liver.1,8,9,19 As Dr. Mohan explains, “AMVUTTRA is a TTR silencer, and it reduces TTR production in the liver,” which means that less can misfold and build up as amyloid deposits in the body.16
AMVUTTRA can cause low vitamin A levels, which can affect vision, so daily vitamin A supplementation is recommended. Other side effects include pain in the arms or legs, pain in the joints, and shortness of breath.16
AMVUTTRA has been a good fit for Pete and his life. He’s been able to plan family gatherings and charitable events around his 4 doses of AMVUTTRA a year. Treatment consists of one injection, every 3 months, given by a healthcare provider,16 so Pete knows he’s getting the proper dose each time.
Pete is still getting used to life with hATTR-CM. He’s slowed down, but he hasn’t stopped. Pete is focusing his energy on enjoying time with Kari and their 5 grandchildren in their backyard playhouse—and on raising awareness about ATTR-CM. One way is through his involvement in Play by Play, a new initiative from Alnylam that brings together former pro athletes living with ATTR-CM and their care teams to share their personal journeys.
Pete’s life looks different now, but the qualities that defined his early life—strength, perseverance, and the will to keep moving forward—remain. “I’ve had losses, but the losses give me a reason to fight and raise awareness about this disease, especially in the African American community. I’m sharing my story to contribute to making a change.”
See below for safety information and click here to learn more about Pete Shaw’s hATTR story and treatment with AMVUTTRA.
Indications
What is AMVUTTRA® (vutrisiran)?
AMVUTTRA is a prescription medicine that treats the:
- cardiomyopathy of wild-type or hereditary transthyretin-mediated amyloidosis (ATTR-CM) in adults to reduce heart-related death, hospital stays and urgent visits.
- polyneuropathy caused by hereditary transthyretin-mediated amyloidosis (hATTR-PN) in adults.
Important Safety Information
What are the most important things I should know about AMVUTTRA? AMVUTTRA can cause low vitamin A levels
Treatment with AMVUTTRA lowers the amount of vitamin A in your blood. Your doctor will tell you to take a vitamin A supplement every day. You should not take more than the amount of vitamin A recommended by your doctor.
Low vitamin A levels can affect vision. If you have problems with your vision (e.g., night blindness) while taking AMVUTTRA, talk to your doctor. Your doctor may refer you to an eye specialist.
What are the common side effects of AMVUTTRA?
The most common side effects of AMVUTTRA were pain in the arms or legs, pain in the joints, shortness of breath, and low vitamin A levels.
These are not all the possible side effects of AMVUTTRA. Talk to your doctor about side effects that you experience. You are encouraged to report negative side effects of prescription drugs to the U.S. Food and Drug Administration (FDA). Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.
For additional information about AMVUTTRA, please see the full Prescribing Information
References:
- Kittleson et al. J Am Coll Cardiol. 2023;81(11):1076-1126.
- Hazenberg. Rheum Dis Clin North Am. 2013;39(2):323-345.
- Ibrahim et al. Cell Mol Life Sci. 2020;77(7):1421-1434.
- NIH. Updated November 8, 2023. Accessed September 2026. https://ghr.nlm.nih.gov/condition/transthyretin-amyloidosis
- Rozenbaum et al. Cardiol Ther. 2021;10(1):141-159.
- Rintell et al. Orphanet J Rare Dis. 2021;16(1):70.
- Nativi-Nicolau et al. Heart Fail Rev. 2022;27(3):785-793.
- Bezerra et al. Front Mol Neurosci. 2020;13:592644.
- Ando et al. Orphanet J Rare Dis. 2013;8(1):31.
- NIH. Updated December 6, 2024. Accessed September 2026. https://www.nhlbi.nih.gov/health/cardiomyopathy
- Hawkins et al. Ann Med. 2015;47(8):625-638.
- Maurer et al. J Am Coll Cardiol. 2016;68(2):161-172.
- Sekijima et al. J Neurol Neurosurg Psychiatry. 2015;86(9):1036-1043.
- Maurer et al. Circ Heart Fail. 2019;12(9):e006075.
- Amyloid Awareness. For patients and their support network, including physicians, nurses and medical students. Accessed September 2026. https://www.amyloidosissupport.org/AmyloidAware_Booklet.pdf
- AMVUTTRA Prescribing Information. Cambridge, MA: Alnylam Pharmaceuticals, Inc.
- Stern et al. J Card Fail. 2024;30(5):669-678.
- Kourelis & Gertz. Expert Rev Cardiovasc Ther. 2015;13(8):945-961.
- Gertz. Am J Manag Care. 2017;23(7 suppl):S107-S112.
AMV-USA-01794
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