During Volunteer Appreciation Week, held annually during the third week in April, Pheo Para Alliance will recognize volunteers who have provided outstanding service to those affected by pheo para. The nominees and winners are chosen by the pheo para community, an honor truly reflective of the gratitude and appreciation of their peers.
Nominations for the 2024 Pheo Para Phenom Awards were accepted from Thursday, March 28th – Monday, April 8th in the following categories:
- Phriend of the Year – The most prestigious award given annually, this individual has served as an enduring advocate leader for those with pheo para through their service as a beacon of inspiration for others affected now and in the future.
- Peer Support Award– This award is given to an individual who has fostered connections between patients and those affected with others, shared knowledge and experience, provided a supportive community and helped decrease isolation and fear of living with the disease.
- Youth Award – this award is given to a patient, under 30 years of age, who has served the mission of Pheo Para Alliance and helped those affected by pheo para.
- Fundraiser Award – This award is given to the person who has raised the most funds for the mission of PPA.
- Ambassador Award – This award is given to the person who has raised awareness of the illness and struggles of patients through their own platform.
FAQs
Who can submit a nomination?
There are no restrictions on who can submit a nomination.
Who is eligible to receive an award?
Anyone who has demonstrated outstanding commitment to the pheo para community. Past winners are ineligible to win in the same category for three years after receiving their award in that category. In addition, the Board of Directors and Volunteer Awards committee members are ineligible to be nominated and receive an award.
Who judges the awards?
Nominations are reviewed by a committee and final decisions are made by the Board of Directors.
How will I know if the person I nominated won the award?
Winners will be notified by email prior to their award being announced publicly on social media, at pheopara.org and by mass email throughout the week. Some nominees may be highlighted on social media that week.
How many times can I submit a nomination?
You can nominate as many people in as many different categories as you wish, but you may not nominate the same person more than once for any given category.
Accomplishments during which time period should included in the nomination?
Accomplishments achieved during the previous calendar year will be considered relevant for all award categories with the exception of the Phriend of the Year. In this case, all accomplishments should be included.
2024 Pheo Para Phenom Award Winners
This week is Volunteer Appreciation Week! All week long we will announce winners for our Second Annual Pheo Para Phenom Awards to recognize stellar volunteers that help support our mission to provide help and hope for those affected by pheo para.
Phriend of the Year
The most prestigious award given, this individual has served as an enduring advocate leader for those with pheo para through their service as a beacon of inspiration for others affected now and in the future.
Winner – Karen Murdock
Congratulations to Karen Murdock, 2024 Pheo Para Phenom Phriend of the Year!
If you’re affected by pheo para you’ve been touched by Karen’s work in and for the community.
Karen was diagnosed with her first paraganglioma in 1989, at the age of 21. At that time, Karen, her doctors and her family were unaware that her tumor was caused by an inherited genetic mutation. Over the next 15 years, her father, twin sister and aunt developed vagal paragangliomas and carotid body tumors, and they knew there was more to the story. As twins, Karen and her sister realized they were great research subjects, and in the year 2000 they participated in a study conducted by Dr. Bora Baysal at the University of Pittsburgh that led to the identification of SDHD as a susceptibility gene for the development of familial paraganglioma syndrome type 1.
In 2021, Karen reached out to Pheo Para Alliance to volunteer her time to help support others. Less than a year later, she took over the U.S. distribution of our Care Kits for the Newly Diagnosed and soon introduced the world to our unofficial mascot, Phearless. Karen fully manages and funds the inclusion of Phearless in our care kits, includes a hand-written note and crafts his teal-and-orange collar by hand. As of early 2024, after assuming responsibility for sending the kits globally, she has personally deployed Phearless to 462 new homes in 47 U.S. States and 7 countries around the world!
In addition to her work on the Care Kits, Karen and her sister are again contributing to pheo para research by taking part in a research protocol at the National Institutes of Health. A self-described introvert, Karen has nevertheless become a passionate, vocal and active advocate for all rare disease patients, taking part in the Society of Nuclear Medicine and Molecular Imaging Hill Day 2023, participating in our Rare Disease Week on Capitol Hill activities earlier this year, and sitting on the Pheo Para Alliance Patient Engagement Committee since 2022.
Karen embodies not only the qualities we hope to see in those who volunteer for our community, but those traits we all aspire to possess. As one anonymous nominator wrote, “She gives a lot of her time to help those who have just gotten a devastating diagnosis to feel comforted, supported, and part of a community.”
Please join us in congratulating Karen!
Special recognition also goes out to the runner-up for this award, Miranda Edwards. Miranda was first diagnosed at age 19 after a heart attack. A few years later she was diagnosed with metastatic disease and told she had only a year to live. 13 years later, she uses her voice to support and educate patients and raise awareness. Through her tremendous online presence as Pheo vs. Fabulous on Instagram, Facebook, Tiktok and her website, she has provided hope and inspiration to countless patients. Miranda is a great phriend to all affected by pheo para, and longtime supporter of the Pheo Para Alliance.
Youth Award
This award is given to a patient, under 30 years of age, who has served the mission of Pheo Para Alliance and helped those affected by pheo para.
Winner – Jasmyn Ramirez
Congratulations to Jasmyn Ramirez, 2024 Pheo Para Phenom Youth Volunteer Award winner! Jasmyn has turned a daunting diagnosis into an opportunity to engage the public about a rare disease and how it can affect those who live with it. In April of 2022, at the age of 19, she was diagnosed with pheo para which she later learned was caused by an inherited SDHB mutation. Since her diagnosis, Jasmyn has used her Instagram account to share her experience and to educate her followers about pheo para. She participated in a Relay for Life event in the summer of 2023, using the opportunity it presented to raise awareness about pheo para and the Pheo Para Alliance. She also shared her story with INCA for NET Cancer Day 2023, and is working on a film documenting her pheo para journey.
We admire Jasmyn’s positivity and determination, and look forward with great anticipation to her future endeavors!
Peer Support Award
This award is given to an individual who has fostered connections between patients and those affected with others, shared knowledge and experience, provided a supportive community and helped decrease isolation and fear of living with the disease.
Winner – Jennifer Manzo
Congratulations to Jennifer Manzo, 2024 Pheo Para Phenom Peer Support Volunteer of the Year! A childhood cancer survivor, Jennifer was diagnosed with bilateral pheochromocytoma and a pancreatic neuroendocrine tumor in early 2020 after nearly a decade of symptoms. She began volunteering with the Pheo Para Alliance in 2021 and quickly gravitated to supporting others living with pheo para.
Since that time she has become the most frequent facilitator of our monthly peer support meetings and works closely with PPA staff each year to plan our peer support sessions, identify other facilitators, and help determine special topics. She also volunteers in our 1:1 peer support program, volunteered at our Gainesville, Florida regional conference, sits on the Pheo Para Alliance Patient Engagement Committee and served as its chair from in 2022 and 2023.
>We’re deeply indebted to Jennifer for everything she does for our organization – and for the pheo para community. She has truly helped to make the organization what it is today.
Fundraiser Award
This award is given to the person who has raised the most funds and inspired others to do the same for the mission of PPA.
Winner – Chad Gilbert
Chad Gilbert was diagnosed with metastatic pheo in 2022 while on tour with his band New Found Glory. In addition to his band releasing a new album and planning a tour in 2023, he immediately jumped into raising funds & awareness for the illness and encouraging support of Pheo Para Alliance. Funds raised through the release of the band’s album raised $30,000 last year.
On tour, Chad not only used the stage as a platform to educate attendees about pheochromocytoma, but he and the band raffled off a handful of donated acoustic guitars, with proceeds going to Pheo Para Alliance. Finally, throughout 2023, dedicated friends, family and fans donated directly in Chad’s honor. Patients like Chad, who despite their own health challenges, engage their community, are critical in raising funds for this rare cancer to support patients affected.
We are immensely appreciative of Chad’s continued commitment to and support of our mission, and want to take this opportunity to remind him that this community is right there beside him in his fight. Please help us in congratulating him!
Ambassador Award
This award is given to the person who has raised awareness of the illness and struggles of patients through their own platform.
Winner – Jenn Testamarck
Congratulations to Jenn Testamarck, 2024 Pheo Para Phenom Ambassador Volunteer of the Year!
Jenn was first diagnosed with paraganglioma in 2005. Like so many with pheo para, she was initially assured that it was benign. It wasn’t until after her father’s cancer diagnosis that her own research indicated she might have an inherited mutation and, in 2021 – 16 years after her first tumor was removed – she learned that she had metastatic disease.
Since then, Jenn has worked hard to spread awareness about pheo para. She connected with Pheo Para Alliance in 2019, and began volunteering with PPA in 2022. A talented graphic artist who owns her own business, Make Joy Studio, she has donated her time and skill, most notably for 2023 Pheo Para Awareness Week. Jenn created all graphics used, and made some accompanying stickers you can still find and use on Facebook and Instagram.
Along with her three sisters, who tested positive for the same SDHD mutation she has, she also runs and contributes to The Joyful Dazzle, a blog dedicated to raising the profile of paraganglioma and those who have it through their personal journeys. Additionally, as a successful business owner, she is profiled in media frequently and uses every interview as an opportunity to discuss her rare diagnosis and bring the conversation about paraganglioma to an ever-widening audience who we wouldn’t normally reach, but very much need to engage.
We are thankful for Jenn’s contributions to our work in service of our mission, and for the awareness she and her sisters generate. Please join us in congratulating her!
2023 Pheo Para Phenom Winners
Phriend of the Year
Winner – Chad Gilbert
Watch this video that highlights Chad’s accomplishments!
Youth Award
Winner – Layla Adrianovska
Congratulations to Layla Adrianovska who has been awarded the Youth Phenom Volunteer of the Year Award! She has been a volunteer with Pheo Para Alliance for three years. She jumped right into volunteering despite her own enduring pheo journey. She has consistently been the youngest volunteer serving on various committees, including the Patient Engagement Committee, Awareness Week Committee, and a few research initiatives. Despite her age, her insight is always spot on.
Her accomplishments are too many to list here, but a few are highlighted. Layla reached out to sixteen hospitals in Ethiopia to educate them on pheo para as part of the Challenge to Change the World initiative. For the past two years, she created a healthcare provider quiz for Awareness Week. And this year, she is Chairing the 2023 Awareness Week as part of her capstone graduate coursework at Western University in Canada. We are tremendously proud of and grateful for Layla’s enduring commitment to support all patients. Congrats Layla!
Fundraiser Award
Winner – Anne Licker
Congratulations to Anne Licker who has been awarded the Fundraising Phenom Volunteer of the Year Award. Anne has been volunteering with Pheo Para Alliance for many years, but her dedication as a Buffalo Bills fan helped her raised over $22,000 last football season for the mission of Pheo Para Alliance. Thanks to the generosity of Anne’s friends and family, the Buffalo Bills minute pools were tremendously popular and, even better, raised a tremendous amount of money for those affected by pheo para. Anne’s infectious enthusiasm for her home team and raising funds has even inspired her son to raise money for our mission through his Pour a Cause fundraiser.
Congrats also to Betsy Herold as runner up in this category! Betsy has been instrumental in growing Pheo Para Alliance over the past few years. In 2018 and 2022 Betsy underwrote costs for the Gala and was instrumental in selling sponsorships and tickets. Without her support, the Gala, quite literally, wouldn’t have been successful. Her passion and dedication to supporting her family friends affected by the illness is unparalleled. Special recognition to Betsy as a nominee in this category.
Peer Support Award
Winner – Eme-lou Laskey
Congratulations to Eme-lou Laskey who has been awarded the Peer Support Phenom Volunteer of the Year Award. Eme-lou is one of the moderators of one of the largest Facebook support groups for pheo. With over 6,000 members, this group is very active and Eme-lou is always ready to provide a compassionate response or solid clinical information. Despite her own pheo para journey, she spends her time researching, helping people with the diagnostic process and the everyday struggles of this disease. She is a cherished member of the patient community. Here is what others said about Eme-lou:
- Eme-lou Laskey has helped myself and many others through the Facebook group.
- Her answers to questions have been very clear and compassionate, whilst also going through her own experiences. I have felt very comfortable asking questions to Eme-Lou.
- She is always helping every person regardless of what she may be going through.
- Eme-Lou Laskey has and is a very supportive person. She helped me to understand what I was experiencing. Helped to make sense of my life turned upside down.
- Eme lou not only makes patients feel less alone but she will help anyone struggling 24hrs a day.
- When you speak with her you feel as though you are her only priority. When she commits to helping, she gives it her whole heart.
- I can’t think of a more suitable peer support group, mentor, leader, and friend. Despite her own difficult journey with the disease she always makes time for everyone else. No matter what, you can always count on Em’s support.
Ambassador Award
Winner – Miranda aka @pheovsfabulous
Congratulations to Miranda aka Pheo vs. Fabulous who has been awarded the Ambassador Volunteer of the Year Award. Miranda was first diagnosed at age 19 after a heart attack. A few years later she was diagnosed with metastatic disease and told she had only a year to live. 13 years later, she uses her voice to support and educate patients and raise awareness. Through her tremendous online presence as pheo vs. fabulous on Instagram, Facebook, Tiktok and her website, she has provided hope and inspiration to countless patients. The ‘always fabulous’ Miranda provides a wealth of resources, tips and tricks to navigate all aspects of the patient journey. She has hosted a number of live feeds in honor of Rare Disease Day and Pheo Para Awareness Week. She also participated in the Virtual Phitness Fundraising Challenge and had the largest team of 50+ team members. Most recently, her story was shared broadly on insider.com! She has inspired so many patients to thrive despite the circumstances. Please help me in congratulating Miranda aka Pheo vs. Fabulous for winning the Ambassador of the Year Award. Congrats Miranda!
Winners will receive an acknowledgement online, as well as a personalized award for their category.