Working at Taysha is such an amazing opportunity to contribute to treatments that can potentially change the lives of children and their families. I can't think of a better way to use my experience and commitment to healthcare.

I am inspired by--and try to emulate in my work--the determination, compassion and hope of the rare disease community.

As a #RareAlly, I work cross-functionally with my fellow Taysha team members to support our ongoing effort to eradicate monogenic CNS diseases. We are true allies to all of our stakeholders, including our patient community, by being transparent through proactive communication.

By day, I work collaboratively with my colleagues to make gene therapies for rare disorders a reality. On the weekends, my dog Watson and Cricket help me bring joy to kids with rare disorders at children's hospitals or the Ronald McDonald House.

#RareAlly means being a partner, ensuring that you listen, learn, and demonstrate collaboration in a meaningful way to the rare disease groups were are working with.

My mother and my wife have been my rock and inspiration. My mother as she is battling various rare illnesses that have altered her way of life, and she tries to set aside her health issues putting others before herself, which inspires me. My wife is a cosmetologist and at many occasions she would dedicate her talents making home visits to clients or others impacted by a rare disease in order to make them feel beautiful inside and out.

There is nothing more inspiring to me than seeing a family come together to provide the best life possible for their loved one living with a rare condition. The devotion, compassion, determination, self-sacrifice, hope, and joy they share day in and day out as a family shines a bright light on humanity. I am always so grateful for the opportunity to spend time with families, and, truly, their example lifts all of us higher.

RareAlly is a very committed, diverse, and continually growing community. It's hyper-focused on addressing the needs of the community members impacted by an ever-increasing number of diseases that when characterized individually are considered rare.

The families who have loved ones that are living with a rare disease are my inspiration. I try to summon even a small percentage of their strength, perseverance and caring into how I interact in the world. The scientific progress in this area is due in large part to their efforts, and it inspires me to go further and work harder for them.

The opportunity to be a small part of the force for good

My children are my inspiration - they are the reason I work on potential treatments so that one day a family won't have to hear "take your child home and love them, there is no treatment."

I aim to always learn from those around me and share my knowledge. I have found the rare disease community, including scientists, parents, physicians, and patients, to be amazingly friendly and positive partners with each other. That is the secret to our success.

When I look at my son and think about the projects we are working on at Taysha, I can't help but feel the urgency to get our products in the clinic.

I am lucky enough to have two people close to me who are inspirations in rare disease. The first is my husband. In his professional life he is dedicated to treating children with rare disease and the ongoing work to identify ultra-rare diseases. The second person is my stepfather, who has a few personal links to rare disease. He decided to raise money for NORD through their Running for Rare team and complete a 'bucket list' goal by running his first marathon a few years ago at the age of 67. In addition to his training, he spent months focused on building awareness of rare disease through his personal networks. NORD paired him with a young woman living with Pompe disease and they developed a strong relationship in the months leading up to the race.

Being a #RareAlly is acknowledging the strength of individuals to inspire and impact change. Together, the possibilities are endless!

Supporting all those in the rare disease community.

Most rare diseases don't have a treatment, just because something is rare doesn't mean it is any less important. I'm proud to be working at a company trying to advance gene therapies to serve a population of patients who suffer from diseases with high unmet medical needs.

The founder of the Neuroendocrine Cancer Awareness Network. As an advocate and a patient, she and her husband Bob taught me what it means to be a part of the rare disease community. It has been over 10 years now and I am still in awe of the impact her and her team have on the neuroendocrine community through education, patient support, and research activities.

Every single patient

Six years ago I was diagnosed with Systemic Sclerosis (Scleroderma). I quickly felt a circle of love, strength and inspiration fold around me. This circle is comprised of my family, friends, co-workers and other sclero warriors living with this rare and presently incurable disease. As a Taysha employee, I feel honored to contribute one small piece towards improving patient's lives and ultimately eradicating monogenic CNS disease. I am deeply committed to being a part of our patients' circle.

My younger sister Santana was diagnosed with epilepsy when she was a toddler and to be a part of her journey is something that I will carry with me forever. It was so hard seeing her have seizures at such a young age and to hear her apologize when it was over was just heartbreaking. The disease was relentless, brutal and didn’t care how young she was or how difficult it made her life. Seeing some adults be uncompassionate was so shocking but she was, as continues to be, such a selfless and compassionate human being. Thanks to the amazing doctors constantly working on new medications, and the clinical trials that she was able to participate in, she hasn’t had a seizure since she was 14 years old. Seizure free for over 20 years! I am so beyond grateful that she was able to receive such incredible treatment and she is able to live her best life! I am honored to be a part of a company that is not only continuing the work to help other children, like her, to live but a company that cares deeply for the lives of those impacted by disease. To me that is what a #RareAlly is.

When it comes to RD, the communities that rally together to support each and every patient are my source of strength and inspiration - they are the backbone of the work we do - and the patients are the heart. Together, we can make a real difference - and that motivates me every day.

"My husband and son are my rock, because they encourage me to stay focused every day. My passion and strength comes from the relationships I have built while leading a mission trip to Dominican Republic every year alongside my son and other team members. Since 2014, we have served a forgotten village that has intermitted electricity and unclean water, where they have to collect their water at the bottom of their mountain in a river, which is used for bathing or via broken pipes turned on and off by the government. My greatest inspiration has been watching young adults grow and become more compassionate for those they serve."

All of us who are rare allies together are united by the common goal of helping those afflicted with severe and rare disease. We advocate for them, teach the world about rare disease on their behalf and do our best to understand the diseases from a scientific perspective so that we can discover and develop treatments that may be able to offer some help.