Following the loss of their son, Freeman, Misti and Will Staley used their experience of the challenges of syringe and pump feeding and created the FreeArm; an aid to help other families with tube feeding. Now employed in homes and hospitals across the world, the FreeArm is a wonderful legacy to their beautiful son

RARE entrepreneur series: meeting the beating hearts behind the RARE brands

The FreeArm was created by parents Misti and Will Staley when they needed a helping hand tube feeding their son Freeman. The FreeArm holds gravity syringe feeds, pump feeds and infusions at the hospital, home and on-the-go. The FreeArm clamps to flat surfaces and rounded bars while the bendable arm bends to the exact height that gravity feeds are tolerated best. Attach a pump and feed bag, allowing you to ditch the IV pole. The FreeArm bends up easily to fit in your bag, making eating on the run a breeze. The FreeArm provides an extra hand for consistent Tubie meals anywhere!

1.

What was the driving force in starting your own business in the rare disease space? Was there an unmet need you were responding to?

Our son Freeman was born in 2015. We had no idea that he would have any medical complexities, but three hours after he was born he was life flighted to Arkansas Children’s Hospital, two hours from our home. We were in the NICU for three and a half months and found out that Freeman had a hole in the top and bottom of his heart, a coloboma in his eye, an extra rib, a horseshoe shaped kidney and Beal’s Syndrome, although he showed no outward signs of Beal’s Syndrome. My husband and I were tested for Beal’s, as were my parents. Genetic testing came back that myself and my dad were both positive for Beal’s although we also showed no signs. All that we had learned through Freeman’s DNA was still a huge mystery.

Freeman was discharged from the NICU with gravity syringe feeds during the day and pump feeds at night. In the NICU, Freeman’s gravity syringe feeds were always rigged, hung from his bed or taped to the side of his crib. At home I needed an extra hand tube feeding Freeman, so my husband and I created one: the FreeArm!

The very first FreeArm was nothing more than two 1-inch by 1-inch pieces of wood on a hinge to make an upside-down L-shape. We taped this to the back of Freeman’s crib and I was able to hang his gravity syringe feeds from the top piece of wood. However, later we would put more energy into perfecting the FreeArm for mobility and better quality of life. We knew other families also needed a helping hand while tube feeding.

2.

How does your business benefit the rare disease community?

The FreeArm holds gravity syringe feeds, pump feeds and infusions at the hospital, home and on-the-go.

For European customers the FreeArm Muscle can be purchased through Nutricia.

If you are in the US, contact your DME (home supply company that ships your monthly tube feeding supplies). Let your DME know about the FreeArm Muscle and ask if they can supply one to you and bill your insurance. The more families let DMES know about the FreeArm, the more DMES will see the importance of providing the FreeArm to all of their patients.

We are also currently offering a large discount to families purchasing the FreeArm out-of-pocket through our website, and for Rare Revolution Magazine readers we would like to offer an additional 20% when you use code RARE20 at checkout on www.freearmcare.com.

3.

What advice, if any, did you get when setting up your business? Has there been anyone in particular who has been pivotal in supporting your business?

We started with the Arkansas Small Business Technology and Development Center. From there, we were accepted into the Delta IFund, a small business accelerator programme. We were able to pitch for start-up capital and really learned the ins and outs of customer discovery. We called hospitals and caregivers every week to see if they had the same pain points with tube feeding that we did. It was in this programme that we really learned that the FreeArm would be beneficial for clinicians and families.

4.

How do you manage the demands of running a business with your own health needs, those of someone you care for, or those of your employees?

Running FreeArm has been a very healthy way for me to grieve the loss of my son. The FreeArm gives me a reason to get out of bed in the morning. I still feel very close to Freeman. I feel that most days he’s sitting beside me at my desk saying “Go momma, go!” Freeman’s brief life continues to inspire me and so many others.

5.

What advice do you have for someone starting their own business?

Go for it! It’s far from easy, but it’s super rewarding. You are going to have tons of questions, so look for helpers and mentors.

6.

What are the most rewarding aspects of establishing and running your own business?

Hearing from families that the FreeArm has changed their life. Families do not feel tethered to an IV pole anymore and they have a helping hand to hold the gravity feeding syringe. We love all of the photos that families share with us using their FreeArm on-the-go. We share these on our Instagram, Facebook and LinkedIn channels. Follow us to join in the fun! Through our social media channels we have created a small, loving community of Tubies, spreading the word that tube feeding is just another way to eat.

7.

What would you consider to be the greatest achievements of your business thus far?

The FreeArm is being used in every US state and over 24 countries!

8.

What advice would you give someone considering working in the rare disease space?

We love the tube feeding community that Freeman has made us a part of. We have created strong friendships with families using FreeArms. We follow them on Instagram, message them when they are sick and sometimes send flowers when they are in the hospital. The rare disease space is a large, loving family. I would advise anyone to jump in, spread some love and help out where you can.

9.

What are your hopes for the future of your business?

We are working hard to have the FreeArm supplied by more and more hospitals and home supply companies. We want the FreeArm to get to every family that needs one, covered by insurance and provided at no cost to the user. We are getting closer to this every day in the US.

10.

If you hadn’t founded FreeArm, what was Plan B?  What did your 10-year-old self want to be?

My degree is in art. Before Freeman and the FreeArm, I taught afterschool art and mural classes to students; we have painted murals all over our small town. Now that the FreeArm keeps me so busy, my husband’s company Thrive Inc, www.thrivecenter.org, is now working with students to paint murals. I still try to help when I can. I have always loved painting.