Creating a Community One Box at a Time
Amy Rios October 16, 2019
Two friends share a Multiple Sclerosis diagnosis and a passion to bring comfort and community to infusion patients across the country.
Imagine walking into your first infusion appointment, one that could last up to eight hours, in a facility you’ve never been in and, waiting in your infusion chair, is a box carefully packed with everything you’ll need during and after your infusion.
Two Multiple Sclerosis warriors, Brooke and Jessica, are no strangers to the stress that often accompanies infusion day, and after years of relying on one another for advice on what to bring to their appointments, the two friends launched the Just Breathe (JB) Box in May of this year.
While many of the popular subscription-style boxes on the market are fun, frivolous splurges, the JB Box is the result of years’ worth of experience from two seasoned infusion patients and are packed with all the essentials for a comfortable appointment, such as books, games, and snacks.
“I would call Brooke right before my infusion appointment, usually with some apprehension, and she would say, ‘Just breathe’ then give me feedback and advice for how to prepare for my infusion,” says Jessica, co-founder of the JB Box. “It dawned on me that Brooke and I needed to help others prepare for their infusions, and the idea just blossomed from there.”
Brooke was 22 when she was diagnosed with Multiple Sclerosis (MS), a disease of the Central Nervous System that often results in problems with muscle control as well as strength, vision, balance, and sense of touch.
“When I was diagnosed, there were only four medications that were approved for the treatment of MS, and all of them were injectable medications,” says Brooke. “Fast-forward to now, there are over a dozen treatment options for MS, and I’ve tried four.”
Newly married and balancing a full-time job with school, Brooke was overwhelmed not only by the long treatments, but the reoccurring struggle with health insurers to ensure her treatments were covered.
“I went through periods where I would go medication-free because I was so frustrated,” says Brooke. “Not just with the MS diagnosis, but with the hassle of dealing with insurance authorizations, writing letters, and the financial burden that comes with a diagnosis like this.”
Through multiple National Multiple Sclerosis Society events, and a providential mutual acquaintance, Brooke met Jessica, who received her MS diagnosis in 2013, four years after Brooke.
“I received my MS diagnosis three days after my 25th birthday,” recalls Jessica. “I spent thousands of dollars on alternative treatments from people claiming they could cure me and took advantage of the vulnerable state I was in.” After trying a few different treatment options for MS, Jessica too has found an infusion medication and a compassionate site of care that’s helping manage her symptoms.
The unique camaraderie Brooke and Jessica share is one that they hope every patient can experience. Besides providing infusion patients with entertainment during their treatment, the JB Box is also meant to let patients know they are not alone, especially amidst a difficult diagnosis.
“I realized that every time I was in my infusion chair getting treatment, I re-grieved my diagnosis a little bit…I remember thinking that everyone probably feels that way at some point,” recalls Brooke. “At least I can call Jessica or my husband when I feel this way. Not everyone has that type of support, which is why we need to get boxes to patients who might be feeling alone.”
When asked about their ultimate goals for the JB Box, their responses echo one another. “More boxes to more patients!”
Since their launch in May 2019, the JB Box has secured donations from three major donors that have helped them put 50 boxes in infusion centers across the nation. Infusion providers who would like to provide their patients with a unique, positive infusion experience can sponsor a box for a suggested donation of $50 per box.
For Brooke and Jessica, Multiple Sclerosis brought them a community, a friendship and a shared vision to help others just breathe during the difficult times.
“I know it sounds crazy, but my diagnosis has been a blessing in disguise,” says Jessica. “I’ve met some amazing people through this journey, and I continue to look forward to who I am going to meet along the way.”
If you would like to sponsor a JB Box for your patients, or wish to make a donation to the JB Box, visit: https://www.justbreathebox.com/takeaction