Since first engaging with Invest in Others in 2021, Amy Weinberger, Registered Representative, Green Earth Financial Professionals LLC, has become a powerful advocate for individuals and families affected by hypophosphatasia (HPP), a rare and often misunderstood genetic disorder that weakens bones and disrupts lives in profound ways. Through her volunteer leadership with Soft Bones, Inc., Amy has helped amplify awareness, strengthen community connections, and push forward efforts that bring hope to those navigating this complex condition.
Recognized as an Honorable Mention in the Volunteer of the Year category in both 2024 and 2025, Amy’s work reflects a deep personal commitment to ensuring that no family facing HPP feels alone.
Soft Bones, Inc. exists to empower, educate, and connect the HPP community while advancing research and improving care.
Under Amy’s continued involvement, the organization has reached new milestones. In 2025, the National Patient Meeting saw record attendance, reflecting growing engagement across the community. The organization’s myHPP app expanded its reach by 40%, helping patients track their condition while contributing valuable data to guide future research. Meanwhile, support networks, both in-person and online, have grown rapidly, strengthening peer-to-peer connections that are vital for families living with a rare disease.
A key component of this impact is access. Through Invest in Others grant funding, Soft Bones provided travel assistance to families attending the National Patient Meeting, ensuring that those facing significant financial strain could still benefit from education, expert care insights, and meaningful connection. In 2025 alone, 19 travel grants were awarded, including direct support for six families made possible through Invest in Others funding.
For Amy, these moments of connection are what matter most. “For many families,” she shares through her work, “these gatherings are more than events—they are lifelines.” The opportunity for children and adults alike to meet others who truly understand their experiences helps replace isolation with belonging, often for the very first time.
Despite balancing extraordinary personal responsibilities, including caring for family members with significant health needs, Amy continues to expand her advocacy efforts. From engaging with leading rare disease researchers and pharmaceutical partners to championing the growth of the myHPP app, she is helping to bridge the gap between patients, data, and innovation. Her goal: to raise critical funding and scale tools that could accelerate research and improve outcomes for people living with HPP worldwide.
What’s the Future Hold?
Looking ahead, Amy remains focused on increasing access to patient meetings, advancing scientific collaboration, and enhancing the capabilities of the myHPP app, including integrating wearable technology to better capture patient experiences in real time.
Her dedication has also been recognized on a broader stage. Amy was recently featured at Osaic’s WForum, where she shared her story and highlighted the transformative power of charitable work, bringing visibility not only to HPP, but to the importance of advocacy across the financial professional community.
Evie’s Story | A Life Transformed by Community and Hope
When Evie was born in 2009, her family received a devastating diagnosis: life-threatening infantile hypophosphatasia. At the time, there were no approved treatments, and her chances of surviving her first year were uncertain.
Her earliest days were marked by fragility, feeding tubes, oxygen support, and bones too soft to hold their shape. For her family, life became a cycle of fear, uncertainty, and waiting.
Then they found Soft Bones.
Through the organization, Evie’s parents connected with other families who understood their reality, people who spoke the same language of hospital monitors, procedures, and hope. That connection led them to a compassionate-use clinical trial for a then-emerging treatment. Evie began the trial as an infant, and slowly, her story began to change.
Over time, her bones strengthened. The transformation—visible in her X-rays—told a story of resilience: from fragile, fractured beginnings to growing strength and stability. But while medicine helped her body heal, community helped her thrive.
At Soft Bones National Patient Meetings, Evie found something just as critical as treatment: belonging. She met other children who shared her experiences and adults who showed her what a future with HPP could look like, full, vibrant, and possible. These relationships became the foundation of her confidence and identity.
As one parent shared, “When Evie goes to National Patient Meetings, the weight of HPP is lifted for a few days… She gets to sit shoulder to shoulder with her friends, the only people who truly know what living with HPP is like. It’s a gift for her to be seen, known, and celebrated.”
Evie’s story stands in powerful contrast to Amy’s own experience growing up with undiagnosed HPP, decades marked by confusion, misdiagnosis, and isolation. Where previous generations faced silence and stigma, Evie’s generation is growing up with knowledge, support, and a community that understands.
Today, when Amy sees Evie laughing and connecting with peers at patient meetings, she sees more than progress, she sees possibility. Evie represents what can happen when families are supported, connected, and believed.
Through Soft Bones, and through advocates like Amy, that possibility is expanding, changing not just individual lives, but entire generations of families affected by HPP.
