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2023 ANNUAL REPORT
At The Avalon Foundation…
WE BELIEVE WE RISE BY LIFTING OTHERS
WE BELIEVE THAT EVERY KIDDO DESERVES SUCCESS BY OVERCOMONG THEIR CHALLENGES
WE BELIEVE IN THE POWER OF PEER SUPPORT
We are BY KIDS – FOR KIDS!
The RARE Kiddos YOU Support
OUR MISSION
We are committed to our mission of youth-centered leadership development through service to the rare disease community.
By providing emotional support to pediatric patients and their families during life-changing and critical transitions, we help shape a healthier & more positive experience that ensures compliance with treatments as well as family unity.
OUR VISION
We dedicate our time, talent, & treasure to collectively cultivate compassion by caring for kids.
One disease at a time, we envision offering support to ALL pediatric RARE disease families undergoing treatment.
from a #PainBox Mom:
“My family received our #PainBoxes and I cannot begin to tell you how thankful we feel to receive them! My boys were so excited, and they got along better today than they have in a while. Your notes [of encouragement] brought tears to our eyes. Caleb and James are now working on a plan to raise money [for the program] so other kids can be blessed like us!”
The Rare Disease Community
‘Rare diseases affect 1 in 10 people, and more than HALF are CHILDREN. People with rare diseases have tremendous unmet needs including misdiagnosis, sometimes taking many years to finally receive a correct diagnosis. Many times when they do, 95% have no treatment, with zero cures. When a treatment for a rare disease is available, it is vital to give a child and their family all the tools they need to be successful. We like to think of it as ‘putting rainbows in the clouds.‘ Offering hope and encouragement during times of great challenge ensures TOTAL WELLNESS- heart, mind, and body!” -the youth leaders of The Avalon Foundation
Reflections from our Leaders
BOARD OF DIRECTORS
Deborah Ayres, President of the Board
Every year we have seen incredible mile markers of growth, and 2023 is no exception. The Board of Directors welcomed a new Board Secretary as well as a Director of Marketing. We also expanded leadership with the addition of permanent committee members overseeing various projects and events. The traction gained by added staff allowed the Board to turn its focus to development and strategic planning for long term goals. We were able to create/improve systems and standards increasing efficiency and productivity. The team we currently have is the most engaged board to date, and are strong collaborators. While we are a young group, the energy is high and engagement is electric! I am excited to embark on the next phase of growth and expansion with them.
STAFF
Jennifer Gruber, Programs Director
Our motto, “By kids, for kids” truly stood out this past year in the actions taken by not only our youth leaders by but the vision of the board to support our KC4K board. Looking back on 2023, we successfully added a staff Youth Leadership Director to fully support the efforts of the youth board as they found new and creative ways to engage the community and recruit future board members. Our PainBox program continued to provide support to our patients in a new streamlined and effective process. We also continued to make more community partner connections and engage new families with volunteer opportunities. With these new partnerships we are engaging our youth leaders in exciting ways leading into 2024. With our new collaborative team, strong youth leaders and amazing support staff the opportunities for creative growth are endless. We have found this year that the changes we have made has and continues to provide positive growth opportunities for the future. With great leadership comes great opportunity for success!
YOUTH LEADERSHIP
Cecilia Chowdhary, Youth Advisory Board
In 2023,, we saw an influx of new patients and new leadership that has allowed our organization to make a significant impact. In an effort to continue strengthening membership of our board our new leadership innovated fresh ideas to explore different recruitment events. Additionally, our existing events and procedures were streamlined. Over the past year we have seen greater efficiency in our shopping procedure, as well as new and successful events such as the Blanket Bash and the Senior Dinner. Looking ahead, I am excited to see our expansion with new recruitment events as well as our continued commitment to serving patients in our program.
ACCOMPLISHMENTS OF 2023
Total Care Packages Sent
In Funding
New Patient Requests
New Families Volunteering
- added 11 new leaders boards/staff
- added 5 new events
- collaborated with 3 community organizations
- added Volunteer Coordinator position
- finalized school outreach program
- graduated 3 founding youth members
- hired Youth Leadership Director
- expanded leadership program structure
- acquired 5 new business sponsors
- acquired 2 new Champion level partners
- implemented Social media schedule & campaigns
- created Senior initiatives on Youth Advisory Board
- accomplished over 30 shopping trips
- formalized systems & procedures
- several speaking engagements for youth
- attended NORD conference
FINANCIAL STATEMENT
TOTAL FUNDING: $102,608
TOTAL EXPENSES: $100,972
MOVING FORWARD
As an organization committed to youth development and support for the RARE disease community, 2023 was a year of significant strides. With that momentum, all our 2024 goals support these strategic priorities:
- Youth Program Expansion: we are actively expanding our Youth Program to accommodate more kids from middle school and high school. Our new SCHOOL OUTREACH PROGRAM is a collaborative effort to identify young people who are seeking personal and professional growth through service. This initiative will ultimately support our program expansion to more rare disease populations.
- Strategic Development Plan: We are focused on INCREASING VISIBILITY & RECOGNITION in our community to attract collaborative partners and resources to support our continued growth. We are seeking additional leadership in our committees as well as on our Board. We are working with a Grant Strategist to access new funding sources as well. This will position us to be fully staffed and funded for both our programs at full capacity in the next 18 months.
FEEL our momentum and JOIN US! 🌟🤝
A Big Thank You To All Our Donors!
We make every effort to build a relationship with our donors & sponsors. We want you to not only KNOW you are important to us, we want you to genuinely FEEL it! That is why we still try to keep up with hand-written notes, in-person connection time, and making sure we know what your needs are too. Whether you give $20 or $20,000- each and every person who says “yes” to us is helping make an IMPACT! We thank you for your trust, your compassion, & your investment in our mission.
-The Avalon Foundation Board of Directors
A Special Thank You To All Our Partners!
Our success & growth is directly connected to the generosity of these incredible companies.
