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Holly is living with Gorham-Stout Disease smiling big at the Desert Botanical Garden in Queen Creek, AZ. Living with  Gorham–Stout disease  means living with uncertainty in a body that doesn’t follow the rules. It’s a rare disease—so rare that many doctors never encounter it, and many systems aren’t built to recognize it at all. For me, it has meant bone loss, constant monitoring, and learning to coexist with a condition that can change everything without warning. In two days, I will undergo  full jaw reconstruction surgery . Writing that sentence doesn’t make it feel less heavy. This surgery isn’t cosmetic. It isn’t optional. It’s the result of a disease that literally causes bone to disappear. It’s about survival, function, and the hope of stability in a body that has spent too long being unstable. Being disabled with a rare disease means living in a space most people never see. It’s the endless explaining. The medical gaslighting. The fear of losing access to care because your condition doesn’t fit neatly into policy language or budget spreadsheets. It’s watching programs like Medicaid be treated as expendable while knowing, personally, that they are the difference between life and collapse. I am a disabled student advocate and nonprofit leader because I don’t have the luxury of silence. My body has made that clear. Rare disease has taught me that systems fail first—and hardest—the people who are already vulnerable. Disabled students are expected to persevere without adequate accommodations. Disabled adults are expected to justify their existence. And people with rare diseases are expected to be grateful for scraps of recognition, if we receive any at all. This surgery comes at a time when so many disabled people are being told—explicitly or implicitly—that we cost too much, ask for too much, or matter too little. I reject that. My life is not a line item. My healthcare is not a favor. And my survival should never be political. I am scared. I am human. Major surgery is never easy, and when you live with a rare disease, the risks carry extra weight. But I am also grounded in why I speak up. I do it for the students who don’t yet have the words. For the patients who are exhausted from fighting insurance battles while fighting their own bodies. For the disabled community that deserves care, truth, and dignity—not erasure. Gorham–Stout disease has taken bone from my body, but it has not taken my voice. If anything, it has sharpened it. As I go into this surgery, I carry hope alongside fear. Hope that reconstruction brings relief. Hope that healing is possible. Hope that telling my story helps someone else feel less alone—or pushes someone in power to listen more closely. This is not about being inspirational. It’s about being real. Disabled lives are not tragedies. They are lives navigating systems that too often refuse to meet us halfway. I deserve care. Disabled people deserve care. And rare disease patients deserve to be seen—not only in moments of crisis, but in the policies and priorities that shape our futures. In two days, my body will change again. My commitment to advocacy will not.

Yesterday was a historic day for Pinal County. We gathered in Florence at the Board of Supervisors meeting with a clear mission: to protect our neighbors and demand a government that serves all  of us. The turnout was incredible. We stood shoulder-to-shoulder—community members, advocates, and families—united against the expansion of ICE powers in our county. The Victory: NO to 287(g) The message we delivered was loud and clear: We do not accept the harassment of our brown citizens, and we reject the use of local resources to do federal immigration enforcement work. I am proud to share that the Board of Supervisors heard us. They made the decision to disapprove the Pinal County Attorney’s illegal 287(g) agreement , declaring it void. This is a massive victory for civil rights in our community. It stops an initiative that would have turned local investigators into immigration agents and opened the door to racial profiling and fear. When we organize, we win. FOX 10 News Coverage The energy in the room was undeniable, and our powerful turnout didn't just catch the Board's attention; it brought out the media, too. FOX 10 News was present to document this crucial moment for civil rights in Pinal County. Their report captures the significance of this decision and shows what happens when the community shows up in force. You can watch their full report on the meeting below: https://youtu.be/RYq5Zi3-DhY?si=fCAsSeZxLjRo0sd9 My Statement to the Board During the meeting, I had the opportunity to speak directly to the Supervisors. I spoke not just against the harms of 287(g), but for  the needs of our most vulnerable residents. https://youtu.be/hU6wjx10_wk   (Watch my full statement to the Pinal County Board of Supervisors regarding 287(g) and the Section 811 PRA Program) A New Path Forward: Section 811 PRA Program Our advocacy didn't stop at saying "No." We also gave them something to say "Yes" to. I brought forward the Section 811 Project Rental Assistance (PRA) Program , a crucial HUD initiative designed to provide long-term affordable housing and support services for people with disabilities and extremely low incomes. Instead of dismissing this, the Board accepted my statement and committed to looking into the Section 811 PRA Program . This is a potential game-changer for our disabled community members who have been overlooked for too long. Shifting our county’s focus from enforcement and harassment to care and housing  is exactly the direction we need to go. Let's Keep the Momentum This victory is just the beginning. We proved that they will listen when we show up, but now we must ensure they follow through. We must remain vigilant to ensure no back-door agreements are made with ICE, and keep the pressure up to secure the Section 811 housing funding. Thank you especially to Elizabeth Lee , Queen Creek San TanValley Indivisible , RAZE-Rural Engagements , Voices For The Rare and everyone who came out, spoke up, and stood on the right side of history. Pinal County Board of Supervisors Meeting #PinalCounty #CommunityPower #No287g #HousingJustice #Section811 #FlorenceAZ #FOX10Phoenix #VoicesForTheRare

Tomorrow, January 21st, 2026, I will stand before the Pinal County Board of Supervisors to deliver a powerful message: It's time to choose HOUSING, NOT HANDCUFFS! My grandfather, Seledon Martinez , was a WWII Veteran and spent 40 years building the Santa Fe Railroad, literally laying the tracks this state runs on. He taught me the meaning of service and fighting for what's right. Now, as an Extremely Low Income (ELI)  disabled student facing major jaw surgery in 8 days, I'm fighting for my survival. Pinal County has ZERO  accessible housing units for people like me through the Section 811 PRA program. My doctors are 40 miles away, and this county is more focused on 287(g) enforcement (like the disturbing incident at Banner Ironwood on Dec 16th) than housing its most vulnerable. My Proposal:  I'm urging the Board to use SB 1080  to repurpose closed school buildings into "Halls of Healing"—medically-accessible housing. It's a common-sense solution that honors our veterans and protects our community. I'm not doing this alone. Special thanks to Senator Analise Ortiz  (@SenatorOrtiz) for being the only official to listen and escalate this to the Governor's Office (@GovernorHobbs). I’ve also submitted my urgent DES case directly to the Governor's Office (@ArizonaDES needs to fix its broken phone lines for disabled patients like me!). Join me in making our voices heard!  Please share this post and let Pinal County know: #HousingIsAHumanRight #AZLeg #AZeg #DisabilityJustice #VaquerosVote #PinalCounty Sign the petition! https://form.jotform.com/260195782546163 Seledon & Josephine Martinez 1944. Married in 1944, enjoyed 49 years together until Seledon passed in 1993. Seledon served in the US Army World War II, Aleutian Islands. Seledon Martinez 63, worked for the Santa Fe Railroad for 40 years, 1975. Newspaper clipping of Josephine Martinez holding up a banner in honor of her husband in 1975, accompanied by Arthur and Albert Martinez.

Saving money can be a challenge for anyone, but for individuals with disabilities, it often comes with extra hurdles. Expenses related to healthcare, assistive devices, and daily living support can quickly add up. Fortunately, Arizona offers a powerful tool to help people with disabilities build financial security and improve their quality of life: the AZ ABLE savings account program. This program allows eligible individuals to save money without risking their access to essential public benefits. Thanks to Governor Katie Hobbs’ commitment to including the rare disease community, AZ ABLE is opening new doors for many Arizonans. AZ ABLE savings account webpage on laptop AZ ABLE savings accounts provide a practical way for individuals with disabilities to save money for health and independence. What is AZ ABLE and Who Can Benefit? AZ ABLE stands for Arizona Achieving a Better Life Experience. It is part of a nationwide effort to help people with disabilities save money in a tax-advantaged account. The program is designed for individuals who developed their disability before age 26. This includes people with physical disabilities, intellectual disabilities, and rare diseases. The key benefit of AZ ABLE accounts is that the money saved does not count against limits for government benefits like Medicaid and Supplemental Security Income (SSI). This means individuals can save for important expenses without losing access to vital healthcare and support services. How AZ ABLE Accounts Improve Financial Security Many people with disabilities face strict asset limits to qualify for public benefits. Even a few thousand dollars in savings can disqualify them from receiving help. AZ ABLE accounts solve this problem by allowing up to $20,000 per year in contributions that do not affect eligibility for benefits. Funds in an AZ ABLE account can be used for a wide range of qualified expenses, including: Medical and dental care Education and job training Housing and transportation Assistive technology and personal support services Health and wellness programs By saving in an AZ ABLE account, individuals can plan for future needs, emergencies, or opportunities that improve their independence. The Impact on Health and Independence Saving money through AZ ABLE accounts directly supports better health outcomes and greater independence. For example, a person with a mobility impairment might save to purchase a customized wheelchair or home modifications. Someone with a rare disease could save for specialized therapies or equipment not fully covered by insurance. These accounts also help reduce financial stress, which can improve mental health. Knowing there is a dedicated fund for unexpected expenses or personal goals gives individuals and their families peace of mind. How Governor Katie Hobbs’ Support Makes a Difference Governor Katie Hobbs has been a strong advocate for expanding access to programs that support people with disabilities. Her inclusion of the rare disease community in AZ ABLE eligibility criteria ensures that more Arizonans can benefit from this savings opportunity. This leadership highlights the importance of recognizing diverse needs within the disability community and creating inclusive policies. It also encourages other states to follow suit in broadening access to ABLE programs.

Yesterday, my family and I had the privilege to attend a special event at the Arizona State Capitol Executive Tower Luncheon. This gathering was hosted by the Disability Advocacy & Policy Alliance (DAPA) , bringing together legislators, advocates, caregivers, and members of the disability community. The event was a powerful reminder of the importance of coming together to discuss policies that impact lives and to build connections that can lead to real change. The Mission Behind the Gathering DAPA’s mission is clear and compelling: to unify and mobilize an informed disability community in Arizona. This community advocates for policies and legislation that positively impact the lives of people with disabilities. The event was a testament to this mission, as it brought together a diverse group of individuals who are passionate about making a difference. The luncheon provided a platform for open dialogue between legislators and their constituents. It was inspiring to see senators and advocates engage in meaningful conversations about the challenges faced by people with disabilities and the steps needed to address them. Meeting Legislators Who Care One of the highlights of the day was meeting Senator Analise Ortiz . I have followed her work closely because of her reputation for uplifting efforts and genuine care for her community. Meeting her in person was a reminder that elected officials who listen and act on behalf of their constituents can create significant positive change. Senator Ortiz’s approach is a model for how legislators can connect with the people they serve. She listens carefully, asks thoughtful questions, and shows a real commitment to improving lives. This kind of leadership is essential for advancing policies that support the disability community. The Role of Nonprofits in Advocacy The event also showcased the vital role nonprofits play in supporting advocacy efforts. Organizations involved in the luncheon work tirelessly to raise awareness, provide resources, and influence policy decisions. Their presence at the Capitol highlights how collaboration between nonprofits and legislators can lead to stronger, more effective advocacy. Nonprofits bring expertise and firsthand knowledge of the issues affecting people with disabilities. They help ensure that legislation reflects the real needs of the community. Their work is a crucial part of the process that leads to better laws and programs. Supporting Each Other: The Importance of Family and Caregivers I want to give a special shout-out to my caregiver and family for showing up to support me. Advocacy is not just about policy; it’s about the people behind the policies. Family members and caregivers provide essential support that enables individuals to participate fully in events like this. Their presence reminds us that advocacy is a shared effort. It takes a community to create change, and every voice matters. Having loved ones by your side can make a big difference in staying motivated and empowered. What We Can Learn from This Experience Events like the Arizona State Capitol luncheon offer valuable lessons for anyone interested in advocacy: Engagement matters : Showing up and speaking out can influence decision-makers. Building relationships : Connecting with legislators and advocates creates opportunities for collaboration. Staying informed : Understanding the issues and policies helps communities advocate effectively. Supporting each other : Family, caregivers, and allies strengthen the movement. By participating in these conversations, we contribute to a stronger, more inclusive Arizona.

Every day, countless individuals face the harsh reality of feeling invisible in a world that often overlooks their struggles. For those living with rare conditions or facing unique challenges, the fight to be seen and heard can be exhausting and isolating. This is the reality that inspired the creation of Voices For The Rare , a nonprofit organization dedicated to bringing hope, access, and advocacy to those who need it most. This post explores how Voices For The Rare is making a real difference and why its mission matters now more than ever. #nonprofit #rarediseasesupport #noonefightsalone Golden zebra with a blue eye, Voices For The Rare logo banner Hope Access Advocacy. Understanding the Challenges Faced by the Underserved People with rare diseases or unique challenges often encounter barriers that go beyond their health or personal circumstances. These barriers include: Limited access to specialized healthcare Many rare conditions require expert knowledge that is not readily available in all regions. Patients often travel long distances or wait months for appointments. Lack of awareness and understanding Without widespread knowledge, patients may face stigma or disbelief from others, including healthcare providers. Financial strain Treatments, therapies, and support services can be costly, and insurance coverage is often limited or nonexistent. Isolation and mental health struggles Feeling alone in their experiences can lead to anxiety, depression, and a sense of hopelessness. Voices For The Rare was founded to address these challenges head-on by creating a support system that fills these gaps. How Voices For The Rare Brings Hope At the heart of Voices For The Rare is a commitment to hope . The organization believes that no one should feel like they are fighting to exist. Here’s how it brings hope to individuals and families: Building a supportive community Connecting people with similar experiences helps reduce isolation. Support groups, both online and in-person, provide safe spaces to share stories and advice. Sharing success stories Highlighting individuals who have overcome obstacles inspires others and shows that progress is possible. Providing educational resources Clear, accessible information about rare conditions empowers patients and caregivers to make informed decisions. For example, a young woman with a rare autoimmune disorder shared how joining a Voices For The Rare support group gave her the strength to advocate for herself during medical appointments. This connection changed her outlook and improved her care. Expanding Access to Care and Resources Access to care is a critical focus for Voices For The Rare. The organization works to: Partner with healthcare providers Collaborations with specialists help create referral networks and improve patient access to expert care. Offer financial assistance programs Grants and fundraising efforts help cover costs for treatments, travel, and necessary equipment. Host educational workshops and webinars These events provide up-to-date information on treatments, research, and self-care strategies. One recent initiative involved partnering with a regional hospital to establish a telehealth program for patients in remote areas. This program reduced travel burdens and allowed more frequent consultations with specialists. Advocacy That Makes a Difference Advocacy is a powerful tool for change. Voices For The Rare actively works to: Raise public awareness Campaigns and events educate the broader community about rare conditions and the needs of those affected. Influence policy The organization engages with lawmakers to improve healthcare policies, funding, and protections for underserved populations. Support research efforts By promoting and funding research, Voices For The Rare helps drive progress toward better treatments and cures. For example, the organization recently helped pass legislation that increased funding for rare disease research at the state level, opening new opportunities for patients and scientists alike. How You Can Get Involved Change happens when people come together. Voices For The Rare welcomes support in many forms: Volunteering From organizing events to providing peer support, volunteers play a vital role. Donations Financial contributions help sustain programs and expand reach. Spreading the word Sharing stories and information raises awareness and builds community. Advocating locally Contacting representatives and participating in advocacy campaigns amplifies the voice of those in need. Every action counts. By joining Voices For The Rare, you become part of a movement that refuses to let anyone feel invisible. Looking Ahead: The Future of Voices For The Rare The journey is just beginning. Voices For The Rare plans to: Expand its network of healthcare partners to reach more underserved areas. Develop new programs tailored to specific rare conditions. Increase funding for research and patient support. Strengthen advocacy efforts at national and international levels. The organization’s vision is clear: a world where everyone has the support, care, and respect they deserve. https://voicesfortherare.org/

Facing a major surgery once is daunting. Preparing for a second full jaw reconstruction brings a whole new level of physical, mental, and emotional challenges. As January 29th approaches, I find myself caught between anticipation and uncertainty. My body feels weaker than before, weighed down by ongoing treatments and the toll of daily struggles. Despite this, I hold on to hope and the determination to move forward. This post shares my experience navigating the difficult months leading up to this surgery. It’s a story of resilience, coping with pain and fatigue, managing nutrition through a feeding tube, and finding ways to protect my mental health amid family chaos. If you or someone you know is facing a similar journey, I hope my reflections offer insight and encouragement. Physical Challenges Before Surgery Preparing for a major surgery requires strength, but sometimes the body doesn’t cooperate. My physical condition has been fragile for months. The treatment medications and nutritional formulas I rely on have caused persistent nausea and diarrhea. These symptoms make it hard to maintain weight, and despite using a feeding tube, I remain underweight. This undernourished state adds complexity to the upcoming surgery. Surgeons often stress the importance of being as healthy as possible before such procedures. Yet, when your body is fighting multiple battles, it can feel impossible to reach that ideal. Key physical challenges I face include: Constant fatigue that limits daily activities Pain that fluctuates but never fully disappears Digestive issues from medication side effects Difficulty gaining or maintaining weight despite feeding tube support These challenges require patience and careful management. I work closely with my medical team to adjust medications and feeding formulas to reduce side effects. Small improvements in nutrition and rest can make a big difference in how I feel day to day. Emotional and Mental Struggles The mental and emotional toll of preparing for a second jaw reconstruction is profound. I am more vulnerable now than before. The anticipation of surgery brings anxiety and fear, mixed with hope for healing. At times, the emotional exhaustion feels heavier than the physical pain. The holiday season added extra strain. Family gatherings often come with drama and emotional demands that I could not afford to take on. I found myself needing to set firm boundaries to protect my mental health. Avoiding unnecessary conflict and stepping back from others’ emotional issues became essential survival strategies. One of the hardest feelings was being overlooked during meals or social moments involving food and drinks. Not being considered for meals or specialty cocktails highlighted how different my experience is now. It’s a reminder of how illness can isolate you in subtle ways. Preparing for surgery with feeding tube support Preparing for surgery with feeding tube support in a quiet hospital room Coping Strategies That Helped Me Living with chronic illness and preparing for surgery requires more than medical care. It demands emotional resilience and practical coping strategies. Here are some approaches that helped me navigate this difficult time: Setting boundaries : Saying no to family drama and emotional demands preserved my energy. Focusing on small goals : Celebrating small wins like tolerating a new feeding formula or resting well helped maintain motivation. Seeking support : Connecting with healthcare providers, counselors, or support groups provided emotional outlets and practical advice. Mindfulness and relaxation : Simple breathing exercises and meditation helped reduce anxiety and improve mental clarity. Keeping a journal : Writing down thoughts and feelings offered a way to process emotions and track progress. These strategies don’t erase the challenges but make them more manageable. They remind me that I am not powerless, even when my body feels weak. The Importance of Nutrition and Medical Support Nutrition plays a critical role in preparing for surgery. Being underweight increases risks during and after the procedure. My feeding tube has been a lifeline, but it comes with its own challenges. Finding the right balance of formulas that my body can tolerate without causing nausea or diarrhea has been a trial-and-error process. Working closely with dietitians and doctors helped tailor my nutritional plan. They adjusted the formula composition, feeding schedules, and medications to improve tolerance. This collaboration is vital for anyone facing similar health issues. If you are supporting someone with complex nutritional needs, here are some tips: Communicate regularly with healthcare providers about symptoms and side effects Keep a detailed log of feeding times, amounts, and reactions Be patient with adjustments; it may take time to find the right formula Encourage hydration and small, tolerable oral intake if possible Good nutrition supports healing and builds strength for surgery and recovery. Looking Ahead with Hope Despite the physical and emotional hurdles, I am holding on to hope. This second jaw reconstruction is a chance to improve my quality of life and address ongoing issues. The road ahead will be tough, but I am not facing it alone. To anyone preparing for major surgery or managing chronic illness, remember that your feelings are valid. It’s okay to feel tired, scared, or unready. Healing is not just about the body but also about nurturing your mind and spirit. The new year marks another chapter in this journey. I survived another year of existing, and I am ready to face what comes next. To my friends and supporters, thank you for being part of this path. Your kindness and understanding mean more than words can express.

Etiquette is often misunderstood as something superficial—rules about which fork to use or how to write a thank-you note. But at its core, etiquette has always been about how we treat one another , especially when life becomes difficult. Emily Post understood this deeply. Her legendary work on etiquette was never about perfection or social status. It was about respect, integrity, honesty, and consideration for others , particularly during moments of hardship. In many ways, etiquette was meant to guide us through hard times—not disappear when they arrive. Today, it feels like this understanding has been lost. Hard Times Change Everything Living with a chronic illness and a rare disease has required me to pivot in ways I never anticipated. Goals I worked toward, careers I built, and plans I believed were secure all had to be reimagined—sometimes abandoned entirely. Disability doesn’t just change your health; it reshapes your future. Alongside illness came realities many people don’t talk about openly: Financial instability Bankruptcy Living in poverty Being labeled ELI—Extremely Low Income These labels are clinical, but the experience is deeply human. They carry stigma, judgment, and misunderstanding. They also reveal something important: who shows up when life gets hard—and who does not . Etiquette in Hard Times True etiquette isn’t tested in comfort. It is tested in crisis . In hard times, etiquette looks like: Honesty instead of secrecy Integrity instead of convenience Support instead of silence Reliability instead of promises that disappear It means not lying to protect appearances.Not withholding truth to avoid discomfort.Not abandoning people because their circumstances make us uneasy. Being someone others can rely on—especially when illness, disability, or poverty enter the picture—is one of the highest forms of character. What We’ve Stepped Away From Somewhere along the way, we stepped away from the idea that doing what is right matters , even when it’s uncomfortable or inconvenient. We’ve confused politeness with kindness and silence with respect. Emily Post taught that manners were a reflection of values.Values like: Merit Integrity Accountability Compassion These aren’t outdated concepts. They are desperately needed—especially in systems that often fail people living with disabilities and rare diseases. The Quiet Work of Integrity When you are chronically ill, you learn quickly that you cannot afford dishonesty—especially from those you trust. Integrity becomes survival. Clear communication matters. Truth matters. Dependability matters. Etiquette, in its truest form, is not about appearances. It is about how safely people can stand beside you in hard times . A Call Back to What Matters Hard times reveal character—ours and others’. They show us who believes in dignity regardless of income, ability, or productivity. They remind us that etiquette is not a lost art because it is old, but because we stopped practicing it when it mattered most. Perhaps it is time to return to Emily Post’s original lesson:That how we treat one another—especially in moments of vulnerability—is the legacy we leave behind. https://emilypost.com/

I participated in No Kings Day in Queen Creek, AZ , standing up for American democracy and against oppression. I came in costume as the zebra, the rare disease mascot, to represent strength, visibility, and resilience  within the #RareDiseaseCommunity . Proud to stand alongside so many passionate people making their voices heard, including Elizabeth Lee , a nurse running for Congress who’s putting people before politics . Let’s help get her on the ballot and bring compassion and integrity to AZ-05! https://www.nurselee4az.com/ #NurseLee4AZ #AZ05 #NoKings #NoBillionaires #PeopleBeforePolitics #DemocracyInAction

Holly's new jaw reconstruction. Gorham-Stout Disease patient. As many of you know, I live with a rare condition called Vanishing Bone Disease . This illness has taken my jaw twice and has completely changed how I live day to day. Right now, I rely on a feeding tube for all my nutrition and hydration while undergoing ongoing treatment. I’ve been patiently waiting for a full jaw reconstruction, which was originally scheduled but had to be postponed. My oral maxillofacial surgeon and ENT oncology team are currently working to customize a joint replacement along with the jaw to make sure everything is just right. We’re expecting my surgery to be officially scheduled this week, with the procedure planned for sometime in December. Although these changes have brought challenges, they’ve also given me a greater opportunity to advocate and share my story. Life doesn’t always go as planned, but I’ve learned that it’s in these moments we must learn to pivot, stay hopeful, and keep a positive attitude no matter what comes our way. Thank you all for your continued love and support.

Recently, I had the incredible honor of officiating my very first wedding right here in Phoenix. I saw a post from a couple asking for help on Facebook, and something in my spirit told me to reach out. I’m ordained, and I knew this was an opportunity to serve. The couple is currently living out of their car. They’re less than 30 days sober, employed, and deeply in love. What moved me most was how fiercely they support each other through life’s toughest battles. Their strength, resilience, and commitment to one another left a mark on my heart. The Lord makes no mistakes...He brought them together, and He brought me to them. I’m grateful He allowed me to be part of this moment. To the newlyweds: you have my full blessing. Keep fighting for each other and for your future. Congratulations!

I am excited to share that adults over 21 on AHCCCS will now have access to speech and swallowing therapy a huge win for health and dignity in Arizona. This change came down to the wire in budget negotiations, and it passed because so many spoke out and continuied to advocate and it made all the difference. This will change lives and even save the state money in the long run. https://www.bannerhealth.com/newsroom/press-releases/bill-passage