Serve as an Advocacy State Lead

My name is Morgan Rigsby and I have served as the Alabama state lead for the NFED the past couple of years. My son, Carter Rigsby, is impacted by hypohidrotic ectodermal dysplasia. When he was diagnosed, we immediately became involved with the NFED. We have attended two virtual Advocacy Days during COVID and two in person Advocacy Days. In addition, we have established relationships in our senate and congressional offices. Carter is unique in that he has a marker for ectodermal on both sides of his DNA so he inherited this from both his father and myself. This means he will pass it down to all children he chooses to have.



I work with Auburn University as a Business Operations Director. In our personal time our family loves to spend time outdoors!



I am willing to rollup my shirt sleeves and do whatever work is needed. In the past I have helped to represent other states when they did not have an advocate in that area. I have also made relationships with Smile Train advocates. I have spoken at length with specialists that treat Carter in our area about becoming supporters of this legislation. I understand that we have to be committed for the long haul – since nothing happens too fast on the Hill.

Emily Brubaker is a lifelong Alaskan born with hypohidrotic ectodermal dysplasia. She began advocating for the Ensuring Lasting Smiles Act with her parents at six years old, and has continued to advocate since. She has helped make Alaska the first state to have all members of their Congressional Delegation co-sponsor ELSA, as well as the only state to have local and state-level resolutions supporting the federal bill.

My name is Charlotte Gould and I believe a single smile can change the world. I was born with a unilateral cleft lip and palate. I was inspired by my own experiences, and at seven years old I founded the first and only company that sews, sells and donates surgery companion dolls for children facing surgeries and medical procedures. Each of my dolls comes with a kid-friendly sewing kit so doctors, nurses, family members, and even the patient themselves can add stitches to the doll to match and honor the surgical journey of each child. My dolls are made with the purpose of lessening the fear of surgeries, normalizing the scars that come after and celebrating the courage of each child. As I grew older, I realized the power my smile has, and I was wholeheartedly inspired to become a cleft advocate for kids like me. I’ve traveled across the United States, visiting children’s hospitals to donate dolls, from Nashville to L.A, and am especially involved at my local hospital. I had the amazing ability to advocate for full healthcare coverage on Capitol Hill in Washington D.C. last year. I currently serve on the Phoenix Children’s Hospital Teen Board, and the Cleft and Craniofacial Care Center Board. I plan to continue to advocate for special smiles. After all, a single smile can change the world.

My interest in advocating for those with congenital conditions began with my own experiences of having a unilateral cleft lip and palate. My particular passion in advocacy has been finding ways to make medical care and prevention more accessible especially for children with ectodermal dysplasias and craniofacial conditions, and I am excited to dive deeper into this interest as a State Lead.

Samantha Mueller is the mom to two beautiful daughters, one of whom was born with a rare genetic condition (HED). Sam has found her life’s purpose in advocating on behalf of her daughter and all those born with rare diseases…. She considers herself politely persistent, but she’s someone who won’t quit and won’t give up.

My day job is a spacecraft engineer on NASA Science missions. I’m a mom of two daughters affected with Ectodermal Dysplasia and a husband with Ectodermal Dysplasia. I first started advocating for ELSA in 2018 both on Capitol Hill and virtually. I’ve led advocacy meetings as the meeting lead. I helped plan the “extra” events and volunteered at the Broomfield, Co NFED Conference in 2023. Outside of school and work I’m active in our kids elementary school PTO including two years at President and volunteered with the school robotics club.

I was diagnosed with hypohidrotic ectodermal dysplasia (HED) at age 3, and again at 33 through genetic testing. I have 12 dental implants, a journey that was finally completed at 32—one that began when I was just 13 and totaled $1.3 million. I also wear a full hair system to help my thinning, sparse hair look natural and full. My mission is simple: to help ensure that every person gets the chance to smile with confidence, and to prove and provide evidence that teeth are not cosmetic; they are a necessity for daily living.

My name is Erin Sheedy, and I was born with a unilateral cleft lip and palate. Over the course of my life, I’ve undergone 15 surgeries. Alongside my lived experience, I’ve developed a deep passion for advocacy, education, and building community for those affected by craniofacial conditions. I’m also pursuing a career in dentistry, inspired by my own medical history and driven by a desire to help others feel seen, heard, and confident in their care.

Steph has had a remarkable career spanning 14 years in the fashion industry where she then seamlessly transitioned into the realm of medical aesthetics driven by her profound passion for beauty. What truly distinguishes Steph is her remarkable journey — born with a cleft lip and palate, she fearlessly shares her experiences, intertwining tales of resilience with her pursuit of beauty solutions, thus becoming a model of confidence for those facing similar challenges.



Beyond her beauty expertise, Steph has carved a niche on TikTok candidly sharing her weight loss journey, including the hurdles and mistakes, her audience also lives for her healthy food hacks.



This multifaceted blend of beauty, fitness, and authenticity paints a captivating lifestyle narrative that resonates deeply with her followers. Adding to her impact, Steph’s advocacy extends beyond the digital realm. She has graced Capitol Hill for Advocacy Day twice, championing the Ensuring Lasting Smiles Act. She has also taken the stage as a speaker at Cleftcon, an event which is organized by Smile Train. Steph’s story is not just one of personal triumph, but of empowerment and advocacy, making her a compelling figure both online and in the real world.

My name is Maxwell Cohen (He/Him) and I am from Miami, Florida! I was born with a Unilateral Cleft Lip and Palate, and have undergone seven major surgeries. Since I was five, I knew I wanted to become a Broadway actor, and my parents did not let my congenital anomaly stop me from achieving my dreams. Though it was a huge sacrifice for my family, they made sure I received all the dental and oral care I needed that was not covered by insurance. To think that so many people like me cannot ever dream of achieving their dreams because a bill like ELSA has never been signed into law is heartbreaking. I am willing to do everything in my power to change this and fight for what is right.

Last year was my first time advocating for ELSA, and I left D.C. feeling so inspired after hearing many powerful stories. I’m originally from Idaho, but grew up getting medical care in Chicago. I’ve been through a lot, including surgeries, insurance challenges, and all the ups and downs that come with looking different, but I’ve also seen how impactful sharing our stories can be. I’m passionate about making sure every kid gets the care they deserve, and I’d be so excited to help lead the way for Illinois this year!

My name is Selena Marshall. My son Hank has Hypohidrotic Ectodermal Dysplasia and was diagnosed in 2022. We are at the very beginning of our dental journey but immediately jumped behind ELSA because we know all the good that will come from it for so many like Hank who require necessary dental work to live and thrive.



Our first advocacy day was a virtual one in 2022 in Texas. Since that time we moved to Overland Park, Kansas my family and I have made the trip to D.C. in 2023 and 2024 to represent Kansas on Capital Hill along with so many others advocating for ELSA.

I look forward to doing all I can to help get ELSA across the finish line in the very near future.

I am the father of Maddie. We have been involved with the NFED since shortly after our daughter was diagnosed, in 2014, and the NFED has been an invaluable resource. The advocacy efforts by NFED and families are important to us, and we’ve been happy that we’ve had the chance to take part in both in-person and virtual advocacy events. We live in Western Massachusetts.

I am a medical student at the University of Vermont, Larner College of Medicine. Originally from Longmeadow, MA, I pursued my undergraduate studies at the University of Connecticut, majoring in Nutritional Sciences with a minor in Human Rights. My academic background and passion for healthcare have led me to focus on dermatology and healthcare equity.



I have gained valuable hands-on experience working in dermatology, including volunteering at Essential Dermatology in Natick, MA, where I assisted in the creation of biopsy and wound care kits. Additionally, I have conducted dermatology research at Wake Forest University School of Medicine, furthering my interest in the field. My commitment to community service is reflected in my time as a Project Intern at AIDS Connecticut, where I supported initiatives aimed at reducing healthcare disparities for those affected by HIV/AIDS.



Outside of healthcare, I have contributed to the community through leadership roles such as mentoring undergraduate students in the MedMentors program at UVM, and coordinating outreach and operations for Camp Kesem at UConn, where I worked to support children whose families have been impacted by cancer. These experiences have shaped my dedication to improving access to healthcare and supporting underrepresented communities.”

Sister of a boy affected with XLHED, and current Research Associate at MIT. I have also had the privilege of learning under Prof. Schneider and Dr. Peschel in developing a diagnostic technique. I feel I have both the science background and the passion to effectively communicate as to why dental treatments should be included as a fundamental part of healthcare.

My son is affected by ectodermal dysplasia and so is my sister and my dad and I would love to be a part of helping this bill get passed! I want to make a difference and help!

I am an affected individual (HED) in the Kansas City-metro area that, when I’m not working as a Project Manager, enjoy various activities, some with my husband (hiking, cheering on my teams & road trips) and some on my own (reading, strength training & sipping on a good cup of coffee).

Served as state lead and attended ELSA advocacy on The Hill. Our son is affected with HED and has completed dental implants with denial coverage from the insurance carrier.

I’m affected by XLHED and have a 10 year old daughter who is an affected carrier. I have been an ELSA advocate for over 5 years and have had several in person (In DC) and virtual meetings as an advocate. I am willing to continue as the NM lead unless another individual is truly interested. My passion for ELSA will continue for my entire life as my daughter and her children will be affected.

First and foremost, I am a proud mom of a 16-year-old girl, Nicole, who is affected by Hypohidrotic Ectodermal Dysplasia. It was through her diagnosis that my family became connected to this beautiful organization, NFED. I am also a dedicated healthcare advocate and marketing professional with over two decades of experience in corporate marketing, focusing on healthcare, insurance, and patient engagement.

Charles Chakkalo is an e-commerce entrepreneur and policy advocate, and founder of Joey’z Shopping. With a background in legal research, he brings a practical, results-driven approach to public policy. In New York, he’s working alongside NY Senator Sam Sutton to help pass “Ray’s Law,” expanding access to medically necessary care for individuals with congenital conditions.

I am a North Carolina native with deep roots in the Piedmont region. My family lives on our farm, where we raise sheep and steward 150 acres in the Cedar Grove community.

Corinne Altrichter is a dedicated leader, passionate advocate, and proud wife and mother of two boys. As an adult living with cleft lip and palate, Corinne is an advocate for the cleft lip and palate community. Through Smile Train, Corinne serves as a Cleft Community Advisory Council Member, Smile Train Ambassador, and has lobbied on Capitol Hill in support of the Ensuring Lasting Smiles Act. Corinne has also shared her story and expertise through various platforms, including guest speaking engagements at CSU-Fullerton and appearances on the Our Forever Smiles Podcast.



Through her work and advocacy, Corinne aims to inspire and empower others, fostering a culture of inclusivity, acceptance, and support.



Professionally, Corinne serves as the Vice President of Growth at IEP&Me, leveraging her expertise in educational leadership to drive growth and innovation. Her academic achievements include an Education Specialist degree in Educational Leadership, a Master of Arts degree in Autism Spectrum, post-grad teaching licenses in Learning Disabilities and Emotional and/or Behavioral Disorders, and a Bachelor of Science degree in Family Social Science.

I am the mom to a 4 year old born with a cleft lip and palate. I am also the cleft and Craniofacial coordinator at Wake Forest Baptist in Winston Salem NC. I work directly with families during their Craniofacial journey from birth to adulthood.

Recently engaged with NFED, as I have learned more about my diagnosis. Career management consultant in health care, serving primarily hospitals and health systems, as well as medical groups, community health centers, and community-based behavioral health systems.

Rachel Olugbenga is a wife and mother of three children. She is a symptomatic carrier of X-linked hypohidrotic ectodermal dysplasia (XLHED), and her oldest son, Victor, is affected by hypohidrotic ectodermal dysplasia (HED). After Victor’s diagnosis, the family sought support and guidance from the National Foundation for Ectodermal Dysplasias (NFED) to navigate the challenges ahead.

I’m Shelby! I have 4 children with my oldest, El, being affected by ED. I am a Marine Corps veteran and student studying criminology at The Ohio State University.

I am a craniofacial orthodontist at Nationwide Children’s Hospital in Columbus, Ohio. With over 20 years of experience in craniofacial differences, advocacy on behalf of families is a vital part of my vocation.

Rebekah Parrish is a dedicated family advocate and community supporter committed to helping others access meaningful resources and support. Her connection to ELSA is rooted in her lived experience as the parent of a child affected by X-linked hypohidrotic ectodermal dysplasia (XLHED), which has brought challenges in accessing medically necessary craniofacial care—fueling her passion for advocacy, awareness, and supporting families facing similar challenges.

Ethan Richlak is a medical student at the University of Pittsburgh and global cleft advocate whose research and advocacy focus on improving long-term outcomes, psychosocial care, and health policy for individuals with craniofacial conditions. He got involved in ELSA advocacy due to his personal journey of navigating cleft care and the desire to help patients with craniofacial differences get the high-quality care they deserve.

My name is Brooke Peterson! I’m from Montgomery Texas, am a junior in high school, and was born with a cleft lip and palate.

Randi Walker, mom of 4. Kids and myself are all affected by XLHED. Advocacy state lead for 7+ years.

I am a medical student at Baylor College of Medicine in Houston, Texas, who is deeply passionate about addressing coverage gaps in healthcare. I plan on applying to ophthalmology, and am particularly interested in supporting pediatric patients with congenital anomalies so that they can live healthy, fulfilling lives. Although I do not personally know anyone affected by a congenital anomaly, during my time in medicine working with pediatric ophthalmology patients, I have witnessed the importance of children receiving corrective surgeries and medical care early on in life to aid their development. After being introduced to the National Foundation of Ectodermal Dysplasia by an academic mentor, I was inspired to learn more about ocular manifestations of ectodermal dysplasias and wrote a medical article about this topic on the EyeWiki website. I have also advocated with the Texas Medical Association for other policies in healthcare over the last two years, and hope to bring this experience to the team to help promote ELSA to the 119th Congress.

I am the state lead for Utah. I was born with a cleft lip and palate, so was my middle daughter. We have been to the Hill twice to meet with legislators as well as met with legislators in our state to advocate for ELSA. I am passionate about speaking on Advocacy. I have spoken at cleft con and included advocacy for ELSA in that presentation.

Growing up, my understanding of strength, resilience, and unconditional love was shaped by my sister and her journey with ectodermal dysplasia. Physically, I watched my sister endure countless procedures, appointments, and daily challenges that most of us will never have to think twice about, things as simple as being able to eat comfortably, regulating body temperature, or smiling with confidence. Those moments stay with you. This is personal. And this is why ELSA matters.

Marly Eugenio is a patient advocate and public speaker born with a bilateral cleft lip, bilateral cleft alveolus, and a submucous cleft palate. She serves as Washington State Co-Chair of the NW Rare Disease Coalition ELSA / Ally’s Act Taskforce, where she advocates for the Ensuring Lasting Smiles Act (ELSA), Ally’s Act, and expanded access to medically necessary care for individuals with rare and complex conditions.

Mom of two daughters with Craniofrontalnasal Dysplasia. My husband also has CFND but with more mild symptoms. We learned about ELSA at the CCA retreat in Minnesota.

As a parent who has navigated the frustrating reality of the “congenital gap” in insurance coverage, I am advocating against the double standard that denies families medically necessary care simply because a child was born with a congenital craniofacial condition rather than injured by accident. My daughter was born with Ectrodactyly-Ectodermal Dysplasia-Clefting syndrome (EEC), which manifests in having zero adult teeth resulting in a lifetime of dietary restrictions, exhausting insurance denials, challenging financial burden and emotional hardship for our family. In my role with the NFED, I am dedicated to mobilizing Virginia families, amplifying their stories, and partnering with legislators to close the congenital gap.

Madame E is the Founder and President of The Faisal Foundation, a nonprofit dedicated to expanding equitable access to cleft care globally. Madame E currently serves on the Advocacy Committee of the American Cleft Palate Craniofacial Association and as a committee member with Smile Train, where she supports federal policy efforts, including the Ensuring Lasting Smiles Act.

Mom of a 7 year old with ectodermal dysplasia (I live in DC but am from TN).