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 University 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, Business Development
Pam is an experienced research professional with more 25 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 also serves as the President of the Board of Directors and Scientific Advisory Council Lead for the Horses and Human’s 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, Senior Project Manager
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, 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.
Ingrid Kaugars, Project Manager
Ingrid became a Rare Patient Voice Project Manager in September of 2018. She worked in pharmaceutical market research for several years before joining the RPV family; initially as a panelist, then as a Patient advocate and finally as a Project Manager. Hailing from Canada, where she lived in both Quebec and Ontario, Ingrid has also lived in Europe as well as 8 different States. Having lived among people from diverse backgrounds, Ingrid realizes that diseases and medical conditions are not selective; they abound, and patients and caregivers deserve to have their voices heard and opinions matter.
- Hobbies: Being outdoors in winter, travel, cooking, crafts, anything to do with animals
- Pets: 2 dogs, 3 cats, 12 hens and 2 rats (and 3 kids… do those count?)
- Likes: Winter, snow, skiing, hiking, hockey, mountains
- Dislikes: Summer, hot weather, humidity (they just don’t blend well with MS)
- Fun Fact: Ingrid prides herself on her Latvian heritage and upholds Latvian language and tradition with her family
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!