Mission and Inspiration
Our mission
RareiTees for a Cure is a clothing brand with a unique mission to bring awareness to rare diseases, specifically Pitt Hopkins Syndrome. Our inspiration is derived from the founder's daughter, Alexandra, one of 1000+ in the world living with Pitt Hopkins Syndrome. Your purchase helps fund a cure for this rare disease and brings hope to so many.
Our products are inspired by the people and world around us. Beautiful, high quality goods that are designed with you in mind.
100% of your purchase supports rare disease research.
All proceeds benefit the Pitt Hopkins Research Foundation.
Our inspiration
My husband, Matt, and I are the parents of a beautiful, joyful little girl, Alexandra Nicole. We had a happy, healthy pregnancy and delivery, she was an ounce shy of eight pounds and within two weeks was holding her head up. We noticed at between eight and nine months she was not meeting her developmental milestones, she could roll over but not crawl. At 10 months she began early intervention therapy services with weekly physical therapy, bi-monthly occupational therapy and at 14 months started bi-monthly feeding therapy. On April 25, 2016, our world was changed forever. She was 15 months old and after doing the chromosomal microarray via a saliva swab, she was diagnosed with Pitt Hopkins Syndrome by her pediatric neurologist. 2016 was the most difficult year I never imagined having to face. Growing up, falling in love, getting married, starting a family and building a home are all things I dreamed my future would entail. Being a parent to a child with special needs was something that I honestly never thought I would be capable of doing. You can’t plan for it, you don’t expect it, you aren’t ever ready for it…
Through it all, Alexandra has taught us more than we ever could have imagined learning. She continues to be our beacon of light. Shining brightly along this new path. Her sweet “voice” can silence a noisy room, her giggles can brighten any day, her tender touch can soothe any heartache…her sweetness runs deep into her soul. She will help change the lives of others that choose to embrace our life with Pitt Hopkins Syndrome.
While there is no cure for Pitt Hopkins Syndrome, we remain hopeful that one day there will be. Simply put, we are devastated but know through research and support her future will be a bright one.
About the founder
Nicole Anderson, the mother of Alexandra and the founder of RareiTees for a Cure, designed the very first shirt when her daughter's website, Alexandra's Pitt Crew, went live informing her community of her recent diagnosis of Pitt Hopkins Syndrome. What began as one shirt, has now evolved into something much more meaningful and purposeful.
For over a decade, Anderson’s career at the Nation's #1 Most Innovative Higher Education Institution has provided her with experience in nonprofit leadership and management, event planning, donor engagement and marketing and communications. She enjoys spending time with her husband and four-year old daughter, who is the cornerstone of the RareiTees brand and her daily dose of inspiration. Anderson combines her passion to serve, along with advocating for those that are developmentally disabled, by being involved in pediatric disease advocacy groups. As such, she currently serves on the Board of Directors for the Pitt Hopkins Research Foundation, an organization dedicated to finding a cure for Pitt Hopkins Syndrome. In Nov. 2017, City of Phoenix Mayor Stanton appointed Anderson to the Mayor’s Commission on Disability Issues. She is excited to make an impact on local issues concerning those living with special needs. In July 2018, she joined the Board of Directors for United Cerebral Palsy of Central Arizona. Anderson believes her experience, education and dedication has equipped her with the essential skills needed to be a change-agent for her daughter and the greater rare disease community.
Video: Introducing Alexandra
We have put together this brief 10 minute video to help tell our story below.