A rare mama herself, Victoria Arreola is on a mission to unite and empower the rare disease and neurodiverse communities through her podcast ‘Strong and Rare Parenting’. She discusses her own journey with RARE and what drives her to be a change-agent for her sons and for families like her own

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

Strong and Rare (S&R) parenting is on a mission to empower parents, caregivers, and allies to increase awareness, acceptance, and inclusion of neurodiversity and rare diseases worldwide.

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?

As a parent, advocate, philanthropist, and speaker on equity, diversity, and inclusion in all things autism, ADHD, and rare disease, the driving force of Strong & Rare Parenting has been my children. Our ‘Strong and Rare’ journey began seven years ago when my second-born received the diagnosis of Sprengel’s deformity (SD) and Klippel-Feil syndrome (KFS). Shortly after, my firstborn received the diagnosis of pectus excavatum (PE). He also has Autism and attention deficit hyperactivity disorder (ADHD). Going through our ‘rare’ journey was challenging, frustrating, tiring, and overwhelming. It took several years to receive the proper diagnosis. Each time we would have new scans; MRIs and x-rays for example, or follow-up appointments, we would receive a new diagnosis. This led me to research the diagnosis and become a strong advocate for SD, KFS, PE, and neurodiversity. I realised that I needed to be a strong voice for my boys. Consequently, I joined Rare Disease Legislative Advocates.

As a mama of special needs and rare diseases kids, I felt the need to be a voice for our community and so I created Strong and Rare Parenting. I believe that everyone has an empowering story. We can all take a stance in being a voice for our children, or if you are living with a rare disease, you can be the change our community needs. Remember always that your voice matters.

2.

How does your business benefit the rare disease community?

Strong and Rare Parenting provides an inviting space to share both neurodiversity and rare disease journeys. It provides encouragement, inspiration, and a sense of belonging for parents, patients, caregivers, and other allies with a similar mission of being a change agent for our community. There is much work to be done, ‘Strong and Rare’ therefore provides consulting and coaching services to support parents who are ready to take the next steps to becoming strong advocates for our communities.

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?

Since our first diagnosis, I wanted to initiate something. But, with the demands of medical and specialist appointments, and other responsibilities I was not able to start. However, this year I personally invested in a business coach to help me create my business plan. If you can hire a business coach, I highly recommend you do that. If you are starting off with a business idea, I would simply say “get started”. Even if it feels small or impossible, it all starts with an action step to reach your business goals.

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?

As a Strong and Rare mama, I know of the challenges we face when we start our ‘rare’ journeys. I am a single mom who makes things possible for my children and me. As hard as it has been, I found that asking for help is ok. There are times when I do take breaks to reflect on my business goals, I plan out my week and months and set schedules that work for both my children and me. I find time to support my boys along with my health and wellness. Life will never be perfect, it’s a matter of perspective and realistic expectations of what you can truly accomplish. Even on the toughest day, I simply take it to step by step. There are times that are more challenging than others. However, what keeps me moving is my faith, mission, and purpose to be a change agent for my boys and other Strong and Rare families. These families need encouragement and guidance to move forward with their own mission work.

5.

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

Start small, and first plan out what you want to provide as a service or product. Think about how your clients or customers will benefit from your offerings or product. Then build out a map that will show you the direction of your goal. Even when you take baby steps, it is progress that will lead you to success in your business. I would also say to push through when you feel unqualified. Keep going and make a difference for our community.

6.

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

The most rewarding part is the stories I hear after a family joins me for a podcast episode. It reminds them of their purpose and mission to advocate for their children and our community. It empowers them to keep moving forward in their mission to be a voice for our community. It’s life-changing!

7.

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

The greatest achievement in my business is the support each family gets when they are featured on Strong and Rare podcasts. First, is the empowerment of being a voice for their children through advocacy. Second, I find that most of my guests have a purpose and mission, some have started businesses, organisations, and passions to pursue.  Being on the show gives them greater grit and even new opportunities to move forward with their mission work.

8.

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

Start small, know your audience and clients. If you are passionate and want to make a difference for our community please do, we need more voices to share our rare disease journeys. 

9.

What are your hopes for the future of your business?

To continue expanding the podcast and consulting services to spread awareness, acceptance, and inclusion for neurodiversity and rare disease. In addition, I want to continue to be a change-maker in the policymaking for our community that needs access and inclusion.

10.

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

If I hadn’t found Strong and Rare Parenting, my plan B was to continue advocacy and stay in healthcare.

My 10-year-old self-wanted to be a court judge. To this day I still have a drawing that illustrates this vision: it is a drawing of the courtroom.  It is somehow correlated to the advocacy and policy engagement that I will continue to do for my boys and our community.