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Pheo Para Phenom Awards

April 17-21, 2023

This year, during Volunteer Appreciation Week, April 17-21, 2023 Pheo Para Alliance recognized volunteers who have provided outstanding service to the pheo para community.

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 – Chad Gilbert
Watch this video that highlights Chad’s accomplishments!
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 – 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
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 – 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
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 – 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
This award is given to the person who has raised awareness of the illness and struggles of patients through their own platform.

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.

FAQ’s

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.  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 by Tuesday, April 18 and announced 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 Year.  In this case, all accomplishments should be included.