Wes Michael, President and Founder
Wes has been involved market research for more than 30 years. Wes earned his MBA from the University of Chicago Booth School of Business and a BA in English from the University of Pennsylvania. He saw the need for rare patients to be included in market research and created Rare Patient Voice in 2013 to enable patients and caregivers to share their experiences with decision makers. Wes has been amazed at the great reception Rare Patient Voice has gained from both patients and the market research industry. Over the past three years, Wes has grown Rare Patient Voice by personally reaching out to patients across the country and by leading a team that provides excellent and personalized customer service to hundreds of research firms. As President, Wes hopes to see Rare Patient Voice panels grow to include 500 different disease/conditions by 2020. He hopes that what we do can improve the lives of patients who are able to participate in our studies, and of those who come after.
- Hobbies: Walking Ace (see below), piano, history, exercise
- Pets: Ace (mix of a Beagle and Brittany) and Stanley the chocolate Lab
- Likes: To hear from patients who have just enjoyed taking part in a study
- Dislikes: When no one qualifies for a study
- Fun Facts: Wes spent a year in Edinburgh, Scotland and ran cross country with the Hare & Hounds.
Pam Cusick, Vice President
Pam is an experienced research professional with more than 30 years of expertise in study design, implementation, and analysis. Her background in public health communications and research coupled with her passion for patient advocacy dovetail nicely with Rare Patient Voice’s mission and vision. Pam hopes to expand Rare Patient Voice’s panels to include every patient who wants to share their opinions and impact their disease category. Pam earned a BA in Psychology from Sweet Briar College, and a MA in Psychology from the New School for Social Research. Pam is Past-President of the Board of Directors and Scientific Advisory Council Lead for the Horses and Humans Research Foundation. As Vice President of Business Development at Rare Patient Voice, Pam focuses on developing client relationships and expanding patient panels.
- Hobbies: Horseback riding, biking, kayaking, yoga and reading
- Pets: Fergus the Border Collie
- Likes: Dark chocolate, beaches, Wizard of Oz
- Dislikes: Mean people and lying
- Fun Fact: Pam competed as part of the Intercollegiate Horse Show Association team at Sweet Briar College
Ben Shedlock, Director of Field Operations
Ben earned a BA in Business Marketing from Towson University. He joined Rare Patient Voice in May of 2014 as the first Team Member. As Senior Project Manager, Ben works to connect patients with client’s who want to do opinion-based research. He also acts as the Team Leader in Project Management and is the Lead Contact with the Project Programming Department.
- Hobbies: Waiting for the 2nd half of Football Season for the Steelers to start playing, snowboarding (preferably West Coast snow), fine dining (as long as the portions are big enough)
- Pets: Zoe (the forever baby Pit)
- Likes: Tattoos, music, hockey, dogs, food, nice mountain view
- Dislikes: onions, mushrooms, men’s skinny jeans
- Fun Fact: I can only count to nine and a half on my fingers
David Minion, Senior Project Manager
David earned a BA in Business Administration and a BA in Economics from Towson University. He joined Rare Patient Voice in December of 2014. As Project Manager, David works directly with clients and patients to ensure all his studies run smoothly and effectively for both the patients and our clients. David is an active member of the Little People community through Little People of America (LPA) and the Dwarf Athletic Association of America (DAAA). Being “rare” himself David brings a unique perspective to the Rare Patient Voice Team.
- Hobbies: All things Philadelphia sports, mainly the Philadelphia Flyers, skiing, ice skating, random adventures with Willow
- Pets: Willow the adorable mutt
- Likes: Philadelphia Flyers, Netflix, Reading, Reese’s, Spicy Food
- Dislikes: Slow drivers in the left lane, being bored, selfish people
- Fun Fact: David earned a Gold Medal with Team USA at the World Dwarf Games
Michael Taylor, Project Manager
Michael joined Rare Patient Voice in June of 2015 as a Research Associate and currently works as a Project Manager. Michael earned a BA in Psychology from Chestnut Hill College. Prior to joining Rare Patient Voice Michael worked in the patient care field working in a group home for individuals with behavioral diagnosis. This experience has led him to being passionate about meeting and talking to people who have signed up with RPV at events and learning more about their journey with their diagnosis. Michael is also always quick to advocate that we make sure people who participate are always getting a fair amount for their time!
- Hobbies: Reading, fishing, Quoits, traveling
- Pets: Cluney (Black lab + golden retriever) and Zora (German Shepherd + cattle dog)
- Likes: trying new foods, Game of Thrones, outdoor activities
- Dislikes: technology when it isn’t working!
- Fun Fact: Michael is an active member of his local Ancient Order of Hibernians (AOH)
Kirk Munsch, Patient Advocacy Manager
Kirk comes to us from the ranks of the Multiple Sclerosis patient panel. Before becoming an employee of Rare Patient Voice, he and his wife participated in patient and caregiver surveys. With this experience, Kirk really is a patient advocate and can categorically relate to those who have RPV process questions and privacy concerns. He is highly qualified to provide the “yes, you really can get paid for your opinion” question lurking in the back of everyone’s minds. Kirk loves to attend walks, support groups, and education events, and to explore venues outside of the norm (fitness facilities, church functions, non-medical/disability specific health fairs). He has been known to recruit in parking lots and has a portable table he carries in his car. The joke (and it’s pretty close to reality) is where a few are gathered, Kirk will set up his table and start talking RPV because Kirk really likes to say, “There is no downside to Rare Patient Voice, join us today!”
- Hobbies: Fantasy golf and football, surfing the web, learning anything new and working out
- Likes: Traditional jelly beans, popsicles, fried baloney
- Dislikes: Hypocrisy, slackers, lateness
- Fun Fact: Kirk has experienced tornados, hurricanes and an earthquake.
- Best advice ever received (and heeded): No matter who you work for or what is promised always be prepared to lose your job tomorrow and never ever count on anyone else but yourself for your retirement.
Melanie Havert, Project Manager
Melanie joined Rare Patient Voice as a Patient Advocate in 2017 and advanced to Project Manager in June of 2019. Prior to working for RPV, she had a career in nonprofit. Being a true “people person,” she genuinely enjoys her interactions with clients, researchers, caregivers and patients. Melanie is a firm believer that true happiness is achieved through optimism, minimalism and serving others. She loves speaking publicly and jumps at every opportunity to do so, she has spoken at schools, rallies, congregations and even at the California State Capitol; no audience it too big or too small! Melanie is passionate about helping people gain confidence in themselves, to learn self-advocacy, to find their voice and gain the inner strength to effectively be heard.
- Hobbies: Hiking, spelunking, kayaking, archery, painting
- Likes: Being outdoors, theme parks, ziplining, historic architecture, roadside attractions, the beach, and exploring new things with her thrill-seeking daughters
- Dislikes: When people don’t have confidence in themselves, negativity
- Fun Fact: Melanie gets uneasy butterflies in her stomach when she encounters massive natural formations, such as: wide-open cavities that are deep within caves, very large waterfalls, or rock formations that jut out of the Earth; but her uneasiness hasn’t stopped her from exploring them!
Chantel Thompson, Project Manager
Chantel started out in the medical world as a Podiatric Surgical/Medical Assistant and X-Ray Technician. Her career began in the Podiatric and Endocrinologic fields as head of a local "Circulator Boot Department." Here she helped people with diabetes and others to improve the circulation in their legs and feet. She then became a "Legal Advertising Coordinator" with a small town newspaper. The city she hails from is actually one of the few places left in the country that still has two daily, competing newspapers. First introduced to Rare Patient Voice as a panelist, she thought, "Why doesn't everyone else know about this?" and was hired as a Patient Advocate where she could tell the world. After 2 years of working as a Patient Advocate, she was promoted to a Project Management position within RPV. Being a patient with a chronic illness herself, namely Multiple Sclerosis, she understands the daily struggles that patients and caregivers go through and is passionate about advocacy and Rare Patient Voice. She believes a good sense of humor and a positive attitude can help get you through almost anything.
- Hobbies: Foodie (loves supporting local businesses), Travel, Genealogy, White Water Rafting
- Pets: 3 cats, Jyoti, Salem and Boo
- Likes: Halloween, Humor, Unique Finds/Places/People, Wine Tasting, Indian Food
- Dislikes: Negativity, Humidity, Wet Clothing
- Fun Fact: Chantel named a medication that aids patients who suffer from COPD and other breathing problems. Due to a signed confidentiality agreement, she is unable to state what the medicine is called.
Debi Crist, Data Management & Social Media Outreach Specialist
Debi joined Rare Patient Voice in 2017 and is currently the Data Management & Social Media Outreach Specialist. She loves connecting with patients and caregivers as she herself is a patient as well as a caregiver. She has made some amazing lifelong friends in the process. Debi is an active patient advocate in the Crohn’s and Ulcerative Colitis community. She helps newly diagnosed parents with resources and advice to manage this life-changing disease. Before joining Rare Patient Voice, Debi ran a small family business.
- Hobbies: Reading, spending time with her kids and fur babies
- Pets: Buddy & Lucy
- Likes: HOT coffee, Lake Tahoe, Playing Poker
- Dislikes: Lying, Tardiness, people who wear too much perfume.
- Fun Facts: Obsessed with researching real estate and tends to move to a new home about every 2 years. Can read up to 1 to 2 books a week and still manage to work and take care of her family.
Tiffany White, Proposal Development Specialist
Tiffany earned a BA from the University of Central Florida. She joined Rare Patient Voice in 2017. As the Proposal Development Specialist, Tiffany works directly with clients to provide feasibility and pricing for market research studies. Tiffany strives to provide superior customer service to clients and to increase opportunities for all patients who want to have their voices heard. Before working at Rare Patient Voice, Tiffany was a personal trainer and taught Health and Wellness at the high school level. Her passion for helping others combined with her enthusiasm for health education made Rare Patient Voice a perfect fit.
- Hobbies: Working out, running, fishing, scalloping and watching college football (Roll Tide)
- Pets: 2 dogs Maggie (YellowLab) and Ginger (Chiweenie)
- Likes: Spending time with family, laughing, being outside, chocolate and home cooked food (especially her Dad's).
- Dislikes: Snakes, people who are mean, coconut and shopping
- Fun Facts: Tiffany has completed multiple 15K, 5K and mud runs but would love to train and finish a full marathon.
Sarah Sanders, Project Manager
Sarah earned a BA from Towson University in 2017 with a degree in Environmental Biology. Sarah started at RPV in 2016 helping with data entry, then she became a Patient Advocate. Soon she began working in Data Operations as well as helping with Proposal Development. Sarah has dabbled a little in many spectrums at Rare Patient Voice!
- Hobbies: Decorating and researching interior design, drawing mandalas, reducing my carbon footprint, coaching softball and giving private lessons, organizing and list-making.
- Pets: Bronx aka Bubby (Boxer-Shar Pei Mix) and Onyx the black cat.
- Likes: Bright colors, animals, sports, outdoor activities, and scary movies.
- Dislikes: Closed-minded people, being too sedentary.
- Fun Facts: I spent most of my childhood living on a small farm and was involved in local 4-H clubs raising and showing livestock including cows, chickens, ducks, rabbits, goats, horses and pigs. I hope to have my own small farm one day where my children can enjoy doing the same things!
Chris Cooper, Project Manager
Chris obtained his Bachelor of Electrical Engineering at Southern Indiana University in 1996. He had a passion for custom cars and decided to blend the two by becoming heavily involved in building custom show cars for companies like Sony, Alpine, Earthquake Audio, and more. Some of Chris’ work has been published in magazines across the world including Car Stereo Review, Car Audio Magazine, Truckin’ Magazine and LowRider Magazine. Chris took his experience in the industry and opened a school in 1998 teaching custom electronics and auto fabrication for almost 10 years before accepting an admissions position with Kaplan University. While employed with Kaplan University, Chris met his wife Jean, and they now been married 7 years, and have a beautiful 5-year-old daughter named Skyleigh. Chris began working with Rare Patient Voice in 2018 doing YouTube video production, and website management, and now has accepted the Role as Project Manager.
- Hobbies: Keeping up with my 5 year Old, RC Helicopters and Reef Aquariums
- Pets: Lily- Rescued Boxer/ Lab, Spencer -Rescued Heinz 57, Harry – Bearded Dragon
- Likes: Boating, Off Shore Fishing, Mountain Biking, Being a Dad
- Dislikes: Jello
- Fun Facts: Previous Founder and Owner of the Institute of Installation and Technology for almost 15 years. IIT was a tech school teaching extreme car customization and electronics.
Jennifer Neal, Data Management and Social Media Outreach Associate
Jennifer joined Rare Patient Voice in 2017 as a Patient Advocate. She quickly transitioned into our event trainer for new patient advocates. She has attended many patient events and loved meeting our patients in person. Jennifer is now a Data Management and Social Media Outreach Associate. Before joining Rare Patient Voice she worked in education and also started a homebased business. Jennifer loves connecting with patients and learning about their journey.
- Hobbies: Walking, crafting, shopping
- Likes: Spending time with family, kayaking, the beach, coffee and staying busy
- Dislikes: Snakes
- Fun Fact: Jen enjoys rock climbing when she visits her home state California.