RARE DISEASE MONTH 2025
Tomorrow kicks off Rare Disease Month, an annual extension of Rare Disease Day, aimed at highlighting the experiences and challenges families navigating rare diseases face, while providing the community an opportunity to support the cause all month long.
Portland-based, Grammy Award-winning, alternative rock band, Portugal. The Man has announced several February activations, all designed to help rally their audience and the public around funding rare disease research and treatment. PTM will be partnering with the Portland Trail Blazers, Paul Williams, Cinema 21, Revolutions Per Movie, Stormbreaker Brewing, AVP Wine Collective, and more.
“As our family navigates the complexities and financial burden of funding research and treatment for DHDDS we just want to take a moment to thank the community for rallying behind Frances.” said Zoe Manville of Portugal. The Man. “We could not do this without your love and support and we hope you will join us this month as we raise awareness and funds for rare disease.”
All of the events are open to the public, as are all specialty merch drops and fundraisers. Below is a calendar of Rare Diseases Month events you can attend with Portugal. The Man, with proceeds going to Cure DHDDS and Frances Changed My Life.
RARE DISEASE MONTH 2025 SCHEDULE:
Sunday, February 1st — Special Merch Drop in support of Frances Changed My Life (PRE-ORDER HERE)
Friday, February 7th — Revolutions Per Movie fundraiser event with Paul Wiliams and Portugal. The Man (TICKETS + INFO)
Thursday, February 20th — Court of Dreams with Portugal. The Man and the Portland Trail Blazers (TICKETS + INFO)
Friday, February 28th — Rare Diseases Day PTM Fundraiser Beer and Wine Launch Party with Portugal. The Man, StormBreaker Brewing, and AVP Wine Collective — Join us from 6-9pm at 832 N Beech St in Portland) for a special event supporting Frances Changed My Life, alongside Portugal. The Man, StormBreaker Brewing, and AVP Wine Collective. Enjoy 4-packs of Portugal. The Man The Beer and bottles of Portugal. The Man The Wine, available for purchase, or sip on pints of beer and glasses of wine on-site. 100% of proceeds from canned beer sales at StormBreaker and $2 from every pint sold will go directly to the Frances Changed My Life campaign. 100% of proceeds from wine sales will also be donated to the campaign. Come out, raise a glass, and support a great cause!
About Frances Changed My Life
Midway through a Portugal. The Man tour in 2021, John and Zoe Gourley’s daughter Frances was diagnosed with a one in a billion genetic disease called DHDDS. 70% of rare diseases are diagnosed in childhood and more than 90% of rare diseases — including Frances’ — are without an FDA approved treatment. Kids with DHDDS and other rare, neurodegenerative diseases experience the symptoms of mental and physical decline that are usually associated with diseases like Alzheimer’s, Parkinson’s and dementia. Through the Frances Changed My Life campaign, Alternative Rock band Portugal. The Man is working to raise awareness and crucial funds to help change the future for Frances and the rest of the DHDDS community. Learn more at www.franceschangedmylife.com
About Portugal. The Man The Beer
Born from a shared love of Portland Pickles Baseball, StormBreaker Brewing, and Portugal. The Man, teamed up to create something special: a beer collaboration with a purpose. Together, we crafted a Mexican-style lager that’s clean, light, and refreshing, with a delicate balance of subtle corn flavor and mild hop spice. Best of all, it’s brewed to support the Frances Changed My Life campaign, turning every sip into a step toward making a difference. StormBreaker Brewing is an award-winning craft brewery co-founded in Portland, Oregon by Rob Lutz and Dan Malech in 2014. The brewery focuses on a wide range of craft beer and specialty craft cocktails and mocktails in two distinct locations and strives to consistently produce innovative and high quality offerings. Learn more about StormBreaker at www.stormbreakerbrewing.com
About Portugal. The Man The Wine
Portugal. The Man partnered with AVP Wine Collective to create this RARE wine. AVP is a collective winery in Portland, OR which helps emerging winemakers launch and supports experienced winemakers by providing a well-organized, well-equipped winery alongside a supportive community and expert help. AVP’s passion is to offer a safe and inclusive place for all winemakers — but particularly underrepresented winemakers — to gain a foothold in the Oregon Wine industry. AVP worked closely with Portugal. The Man to craft a unique and delicious wine that highlights John and Zoe tastes. This special Syrah was created with grapes from a vineyard in the Columbia Valley AVA and we can’t wait to share it with you! Learn more and purchase Portugal. The Man The Wine here: https://www.avpwinecollective.com/portugal-the-man
Photo Credit: Daniel Fickle [www.danielfickle.com] // Video Credit: Casey M. Dudley [www.CaseyMDudley.com]