About Us
Welcome to Couch Pennies Foundation, a 501(c)(3) organization dedicated to raising awareness for individuals with rare diseases through education, advocacy, and collaboration. Part of our mission is to provide comprehensive support and resources for those affected by rare diseases, working tirelessly to make a positive impact in their lives.
The Inspiration and Story behind Couch Pennies Foundation
At the tender age of 10, Avery was browsing on YouTube, when she stumbled upon a remarkable young woman on YouTube named Talia Joy Castellano. Talia was and continues to be, a sensation on YouTube and various social media platforms, not just for her skill in makeup artistry but also for her inspiring personal narrative. At just seven years old, Talia received a devastating diagnosis of Neuroblastoma, a very rare form of cancer. Despite this, she used her YouTube platform as a medium to share her experiences with cancer treatment and her use of makeup as a way to cope. Talia rose to remarkable heights, becoming an icon for Makeup, appearing on a major talk show, and interviewing celebrities on the red carpet.
As Talia's battle with cancer intensified, leading to a second diagnosis of Leukemia, her life became increasingly shortened. In July of 2013, Avery was anxiously awaiting updates on Talia, she saw the post shortly thereafter that at 11:22 AM, Talia had passed away. Avery described feeling as though she had lost a dear friend. Watching every one of Talia's videos again in shock, Avery realized the profound impact Talia had made on so many.
inspired by Talia's resilience, Avery was compelled to take action. Starting with volunteering at a children's hospital she wanted to do more., She researched and ultimately thought of starting a nonprofit. The name came the same day As Avery stood in front of the couch, rummaging through it for spare change, she muttered, "Couch Pennies," SHe thought the meaning behind it was a perfect analogy for RARE Diseases. It symbolized her belief in the value of small things and the importance of finding worth in overlooked elements.
Throughout Talia's journey, Avery kept the idea of Couch Pennies, a nonprofit dedicated to raising awareness and funds for pediatric cancer research, close at hand. However, it remained a mere dream until August 9th, 2017, when Avery herself was diagnosed with an extremely rare and incurable autoimmune disease called MOGAD. This was the moment Avery decided it was time to bring her vision to life.
Eleven years after discovering Talia, Couch Pennies has flourished and proudly collaborates with Talia's Legacy Foundation, founded by Talia's mother and sister. Together, they are dedicated to supporting research for rare childhood cancers, including the subtypes of Neuroblastoma and Leukemia.
Couch Pennies Foundation is now a nonprofit dedicated to supporting and raising awareness for all RARE diseases.
At Couch Pennies Foundation, we offer a range of initiatives to support individuals with rare diseases. From educational workshops and webinars to advocacy campaigns and collaboration with medical professionals, we are dedicated to making a difference. Our resources include a comprehensive library, financial aid, and support groups to ensure that no one faces these challenges alone.
Our Values
We believe in three main pillars of work:
Education, Advocacy and Collaboration.
Education
Education is one concept we use to support our mission because there is power in knowledge. When we know better, we can do better. Couch Pennies creates informational graphics that are simple to understand. Much of the material used to talk about RARE disease uses terminology that is unknown to someone without a medical degree. We also want to offer a space to educate family/loved ones, organizations and businesses, and medical physicians. This is done through workshops, webinars, and RARE disease events. The biggest problem with a RARE disease is the lack of understanding. We aim to bridge that Gap.
We provide comprehensive education on RARE diseases through workshops, webinars, and a resource library.
All to empower the community with knowledge.
Advocacy
Advocacy can be defined as the act of supporting a cause or promoting a particular viewpoint to influence decision-making and bring about change. It involves speaking up for what you believe in, raising awareness about important issues, and mobilizing others to take action.
Advocacy gives a voice to marginalized communities, vulnerable populations, and individuals who may not have the resources or platform to speak up for themselves. By advocating for those who are often overlooked or discriminated against, we can help amplify their voices and ensure that their needs are addressed. It is a powerful tool for amplifying voices that may otherwise go unheard and holding those in power accountable for their actions.
We advocate by creating initiatives to advance the RARE community such as our RARE Disease Month projects. Our themes have ranged, with our most recent being "Turning Pain into Purpose". We make posts about the obstacles our community faces to ensure proper care and secure rights for diseased individuals.
Collaborate
Collaborating with other RARE disease nonprofits allows organizations to reach a larger audience and have a greater impact on our communities. By combining their efforts and resources, nonprofits can tackle complex barriers more effectively and efficiently than we could on our own. This amplification of impact can lead to meaningful and lasting change.
Building partnerships with organizations, pharmaceutical companies, and medical professionals to drive progress in research, improve care standards, and provide support to RARE disease patients and their families.
Meet our team
At the age of 19, Avery received a diagnosis of a RARE autoimmune condition called Myelin Oligodendrocyte Glycoprotein Antibody Disease (MOGAD).
Following this, she established the Couch Pennies Foundation, recognizing the obstacles and deficiencies within her community. Avery's goal was to create a foundation led by patients, which led her to choose the role of Executive Director. She was elected to this position by the initial board members.
To learn more about Avery's story, you can view her documentary here.
Avery Allmond
Founder and Executive Director
Jessica joined the Couch Pennies team in 2018 a few months after Couch Pennies was founded. After she saw the work Avery was doing, she inquired about becoming a social media manager. In 2022 Jess became the official Vice President and has been a key component of the team.
She was diagnosed with a rare disease called CRPS and knows the obstacles that she faced and is determined to make sure others don't go through the same.
Jess is a proud wife, schoolteacher, and mom to service dog Feta.
Jessica Cummins
Vice President and Secretary
Christian Lira
Co-Chief Operating Officer
Christian is a graduate of Western Sydney University and has worked in finance and tech for over 20 years. Recently, Christian has worked with Microsoft as a Senior Technical Program Manager.
“I am honored to serve on the Couch Pennies Foundation board as COO for (a) bringing RARE diseases to be broadly understood through our outreach communications strategy delivered through simple one-page visualizations, and (b) increasing our communications reach so more people can build knowledge about RARE diseases and the impacts they have on our fellow human beings. I chose Couch Pennies Foundation because I felt the drive and passion Avery and the entire team have, and I felt the need to contribute.”
Mike Kennedy
Co-Chief Operating Officer
Mike is a graduate of the University of Southern California. Mike has worked in sales and marketing for 58 years, including working at IBM and most recently retired from being a CEO at a sales company.
“My purpose for joining the board is to raise awareness for Rare Diseases and provide mentoring to young people who have Rare Diseases.”
Karissa Uko
Director of Marketing
Diversity Board Chair
Karissa is a graduate of Howard University and has 14 years of marketing and professional event planning experience. In 2021 she founded her own company, The Ase Group, a boutique creative agency that specializes in marketing, events, and business development.
"I am inspired by Avery's story and dedication to build a foundation that shines a light on rare diseases through awareness, advocacy, and action. This is important work, particularly with the health disparities and outcomes faced by minorities. Couch Pennies' mission ties in closely with my professional background in healthcare marketing and events, but more importantly my desire to improve the quality of medical care for people of color.
Together, we can help transform the conversation and care for the rare disease community, one penny at a time."
Amberlee Conwell
Board Member
Amberlee holds a Bachelor's from Arizona State University and a Master's from Western Governors University. Amberlee is the Director of Talent Acquisition for the YMCA of South Hampton Roads, VA. She also is a proud mom to two boys.
Sal Rodriguez
Treasurer
Sal is a graduate of California Polytechnic State (Cal Poly) University, San Luis Obispo with a bachelor’s degree in accounting and Cal Poly, Pomona with a Master of Business Administration degree. He has experience working with non-profit, private companies, and the government. “As I transition in my life and career, I want to give back my time and make an impact with a non-profit organization that elevates to support the “Public Good”. I strongly believe in the Mission of Couch Pennies Foundation.”
Nicole Allmond
Board Member/ Caregiver Liason
Nicole is a founding board member and is the proud mother to Avery. Nicole became a full-time caregiver the day her daughter fell ill, and has strongly believed in giving back and giving more to caregivers, since.
Nicole graduated with a bachelor's in Sign Language and was an interpreter for 20 years before her daughter was diagnosed. She is a proud mom of 3 and loving grandmother to 5.
Get Involved
If you are looking to get involved or request assistance from Couch Pennies Foundation, there are several ways to do so. You can share our posts on social media to raise awareness, fill out our online form to request assistance, or reach out to us via email. Additionally, donations are always appreciated to support our cause.