RARE Daily

Rare Leader: Penny Howard, Executive Director, Hope4Harper

May 7, 2020

The Basics
Name: Penny Howard   

Title: Executive director and founder

Organization: Hope4Harper

Social Media Links:

Disease focus:  CDKL5 and similar disorders, which can cause intense seizures, sensory issues, gastrointestinal and craniological difficulties, visual impairment, scoliosis, along with severely delayed developmental growth. 

Headquarters: Carrollton, Texas

How did you become involved in rare disease: Harper Elle Howard was born April 12, 2010 and at just two weeks old, began having seizures. Over the course of 10 months, we traveled across the United States and underwent a multitude of tests. In February 2011, she was diagnosed with a rare, life-threatening genetic disorder known as CDKL5. On January 8,2016, just before her sixth birthday, Harper lost her battle to this devastating disorder and with that we have devoted our lives to finding a viable treatment for CDKL5.

Previous career: Director of sales and operations for an environmental testing laboratory

Education: Bachelor of business administration, economics from Texas State University-San Marcos; MBA business, management, marketing, and related support services from Texas State University-San Marcos

The Organization
Organization’s mandate: Hope4Harper provides HOPE—hope through research, awareness, and family transparency. We provide hope to those living CDKL5 and after CDKL5, hope to those curious about adding CBD to their medication routine, and hope to those interested in donating organs for scientific research.

Organization’s strategy: Hope4Harper’s strategy is to generate more awareness of epilepsy, CDKL5, organ donation, and CBD usage. We fund research centered around each of those areas.  

Funding strategy: Our funding strategy is to find and partner with researchers, research facilities, and organizations that will advance treatments and lead to an eventual cure for CDKL5 and other epilepsies including looking at the use of CBD within those various disorders.

What’s changing at your organization in the next year: We are growing our following to increase our fundraising abilities and expanding our research efforts.

Management Style
Management philosophy: Lead by example and treat those you work with as partners all working towards the same goal.

Guiding principles for running an effective organization: Honesty and loyalty: the two most important qualities any individual can possess. Regardless of how different our views may be, if I can trust you, we can make great things happen.

Best way to keep your organization relevant: Continuously engage with your audience via social media, updates, and events. We struggle with this greatly because Hope4Harper has no more Harper, but we always have hope.

Why people like working with you: I have no idea why people like me. I think I’m a nice person, but you probably have to ask those that work with me. I know where my strengths and weakness are and I always try to keep those in check allowing me to work effectively with various personalities.

Mentor: I don’t have one mentor who shapes our organization or how we operate the organization. There are multiple people who have impacted how that all comes together. I look at their organizations and partnerships. Frances Jensen (Penn Medicine) and Alysson Muotri (University of California San Diego) gave us confidence in helping us pursue something larger than we are. They are a huge part of why we are here. I look at other organizations like the Lulu Foundation.

On the Job
What inspires you: My kids inspire me. I want them to be the best human beings possible.

What makes you hopeful: Before I die, I envision sitting at a conference where they announce a cure for CDKL5. 

Best organization decision: To keep going. There were many times when it became very challenging to go on and we thought we should just focus on family or we were getting too much push back from other organizations but then we would get a random email from a parent who would tell me that a post I made impacted their life. This random email was the encouragement that kept us going and knowing that sharing our life experiences with Harper was making a difference in the lives of others. 

Hardest lesson learned: Knowing when to trust and not trust people. Not everyone who is offering help is doing so with a benevolent intention. 

Toughest organization decision: To keep going.

Biggest missed opportunity: We feel that things have transpired in the manner in which they were supposed to. Sometimes what appears to be a missed opportunity could actually be a blessing. 

Like best about the job: My favorite part of this job is the relationships I have made that will last a lifetime.

Like least about the job: The worst part of this job is that every year multiple children pass away from rare disorders. Every time that happens it is like losing Harper all over again. 

Pet peeve: Dishonesty – there is not much to say about that, I have no room in my life for liars.

First choice for a new career: I had the opportunity to reflect on this when Harper passed away in January 2016.  I had given up my career to manage her care, expand Hope4Harper, and homeschool my daughter Lily. Without Harper’s extensive medical needs, I found myself in a position to choose any career I wanted and put the kids into a school that fit their educational needs.  It was then that I realized I was already doing my dream job—expanding Hope4Harper and homeschooling my kids. 

Personal Taste
Most influential book: The Miraculous Journey of Edward Tulane by Kate DiCamillo. This was the last book Lily was reading to Harper before she passed away. I had no idea when I started this book how relevant the story would be for our lives at that time. 

Favorite movie: Four Christmases

Favorite music
: Classic Rock

Favorite food: Chocolate

Guilty pleasure: Sophia’s Vanilla Bean Latte and Andy’s Frozen Custard

Favorite way to spend free time: Reading educational books

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