Rare Leader: Darlene Shelton, Founder and President, Danny’s Dose Alliance

September 27, 2018

The Basics
Name: Darlene Shelton

: Founder and President

Organization:  Danny’s Dose Alliance

Focus:  Emergency medical protocols for chronic illness and rare diseases

Headquarters: Dexter, Missouri

How did you become involved in rare disease: After my grandson was diagnosed with hemophilia, we realized protocols exist through the United States that are old and outdated that would prohibit him from having his clotting factors administered to him an emergency. We realized we had to do something.

Previous career: I work today as a 23-year, self-employed business and accounting consultant.

Education: B.S. in accounting and business management from Arkansas State University

The Organization
Organization’s mandate: To raise awareness to the issue of our current gap in protection across the United States for those with chronic illness and rare diseases, and to see those protocols change.

Organization’s strategy
: Sheer tenacity (laughs). Our plan is to be that voice, and just a consistent voice, raising awareness to the issue. We’re talking to legislators, people in the medical community, and emergency services. They realize they have these protocols, they just don’t realize what these protocols can do when viewed in light of someone with a rare disease. Everyone needs protocols. What we are trying to do is help them realize that when you have a rare disease, these pre-set, or standards, almost universally will hurt us. It’s a level of education and awareness with them. Also, we’re hoping to be a voice for them (our EMS personnel), so they will be allowed to treat properly and not have their hands tied by old protocols. We’re helping them too.

Funding strategy: We do the two big things everybody does. We have fundraisers—local community fundraisers with families we’re involved with. We also apply for grants and scholarships

What’s changing at your organization in the next year: We are expanding our board and launching a bigger campaign throughout the United States. We were kind of young and dumb when we first started. We didn’t know what we were doing. We thought we were going to tackle the whole United States at once. We quickly realized that this was foolhardy. We hadn’t done any lobbying. We realized we needed to reel it in, bring it back to Missouri, where we lived, had some contacts, and had some people who would take us by the hand. Now we got a Missouri bill passed. With that as a template, we have connected with many national organizations. We are more educated now and better able to sit down and have a conversation with policymakers. We have expanded our board and have boardmembers from the east coast to the west coast, so a better presence in a variety of states. We’re launching bigger initiatives in a variety of states. We are working with several of the large rare disease organizations –NORD, Global Genes, EveryLife—that are helping us raise awareness and making our voice stronger and louder.

Management philosophy: Work hard but have a good time at the same time. Stay calm. I don’t worry a lot. I don’t let things fluster me or get stressed out. I’m good at looking at something, analyzing it, and setting steps to solve it. I’ll keep a smiling face and take what comes along and work through it. There are going to be ups and there are going to be downs.

Guiding principles for running an effective organization: Stay honest and let everyone know your integrity and commitment. We’re in for the long haul.

Best way to keep your organization relevant: Never stop. Consistent awareness on social media, setting up meetings with new organizations, being active with the bigger organizations. Keeping the face of Danny’s Dose out there and trying to help as many families as we can.

Why people like working with you: I like to have fun and I’m very passionate. In the midst of having a lot to do, I believe you have to have some fun and you have to laugh and pour that energy in when it is time. I don’t get very stressed, and that keeps the atmosphere upbeat.

Mentor: There are two. Abbey Myers who started NORD. Also, John and Joyce Taylor, who started the Coalition for Hemophilia B. In hemophilia, hemophilia A is much more prevalent. Back when hemophilia B was first diagnosed as separate than hemophilia A, there were meetings and conferences and research for only A. There was a family whose son had hemophilia B. They realized the need and stepped out on their own, and even developed a drug that they sold to a drug company. They started the Coalition for Hemophilia B. It has grown tremendously. It’s one of the best organizations to this day. They are genuinely good people who try hard everyday to help families in need. Kind of the same for NORD. This was a lady who saw a need for people with rare disease and look at how big NORD is today. They don’t know me. They have no idea they are such role models for people in the rare disease community.

On the Job
What inspires you: The belief that we really can make change happen. I really believe in the United States of America that if you speak up, and you are polite but firm and genuine, you can illicit change, which we’ve done in Missouri and we are doing across the United States. It makes me know every day that every change we make we are protecting another family.

What makes you hopeful: Seeing results and meeting people from the national level who truly care and truly take their jobs at heart and are partnering with us. It lets me know we are going to be successful.

Best organization decision: Jumping in with both feet and just getting started.

Hardest lesson learned: Even when you are doing the right thing there are still going to be haters and there are going to be people against you. The takeaway from that is to just keep doing what you are doing.

Toughest organization decision: Our decision to change medical protocols for all people with rare diseases and chronic illness rather than just hemophilia. We were told it would be easier to get this done quicker if we just focused on hemophilia. That sounds good for a moment, but we couldn’t do that. How could you sleep at night knowing that you took care of me and mine and that there’s another family out there with a rare disease? We’re going to protect everybody or we’re not going to protect anybody.

Biggest missed opportunity: I don’t know of any we’ve missed for big funding. I’m one to take the bull by the horns. I don’t let very many opportunities go by.

Like best about the job: I love meeting people and just seeing that we really are making a difference and educating people on what they should be doing to protect themselves. That’s the most fun part.

Like least about the job: Trying to raise funds.

Pet peeve: People that don’t answer their e-mail.

First choice for a new career: I’m very happy with my life.

Personal Taste
Most influential book: The Bible

Favorite movie: Home Alone

Favorite music: I love worship music. I love the Rat Pack era. I love Natalie Cole with the Nat King Cole voiceovers.

Favorite food: Steak, and I love tomatoes

Guilty pleasure: Hot fudge brownie delight

Favorite way to spend free time: With my grandbabies


September 27, 2018

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