Help CCM Join the 5% of Rare Diseases with a Treatment or Cure

Allison's story began over 15 years ago on the Asian continent, in Mongolia, where she was serving in the U.S. Peace Corps. She was working at a youth development center in the Gobi Desert, where she helped establish the city's first club for disabled youth, when she began experiencing numbness, tingling, and pain in her arms and hands. Peace Corps medical told her not to worry as it was just an overuse injury. She was young, she trusted them, and she completed her full 27 months of service. Back in the United States, she fulfilled a lifelong dream by attending the same Chicago law school her grandfather and father had attended, where she was especially proud of helping military veterans obtain VA disability benefits. Her symptoms continued but were again dismissed. One night, while studying for the California bar exam, her symptoms became severe. A family member who was a doctor recognized something was seriously wrong.

It took eight years, but in 2017, Allison finally got answers. At Stanford, she was referred to Dr. Gary Steinberg, head of neurosurgery, who diagnosed a Cavernous Malformation in her cervical spine. She needed surgery ASAP or risked paralysis. Though successful, the surgery included an intraoperative, days in the neuro-ICU, and nearly a year of recovery — including relearning to walk. That experience became a turning point. Allison moved to Washington, D.C., passed the D.C. bar, and has since become not only a practicing attorney but a passionate rare disease advocate. She helped re-establish the D.C.-area Alliance group, has participated in Rare Disease Week on Capitol Hill, and completed a competitive Everylife Foundation advocacy course. This is her third Strides challenge; over three years she has walked over 90 miles and raised more than $5,000. She has big plans to use her law degree and advocacy experience in the rare disease space — she just has to figure out exactly how.

Elizabeth was diagnosed after Allison. Unlike her sister, she has no spinal malformations — a blessing she does not take for granted. But like Allison, she has innumerable brain lesions — too many to count. Her CCM 2, combined with her premature birth, has given her a long and complex list of conditions: ADHD, autism, OCD, depression, learning disabilities, and challenges with proprioception, vestibular processing, and vision. Seizures are a significant part of her life — she has had approximately five — and Long COVID has made them worse. She has not, thankfully, had a major brain bleed, and she knocks on wood every day for that.

Elizabeth has always been a person of deep faith and conviction. She was an activist and an Episcopalian long before her diagnosis, but her CCM journey made those parts of herself even more central to who she is. She lives in Portland, Oregon, where she works as a caregiver — because helping others with disabilities maintain their independence is not just a job, it is a calling. She is a proud cat mom to La Paz, named after the capital of Bolivia, because she loves peace, Bolivia, and the Spanish language. She is also an immigrant rights activist, a disability rights activist, and a cyclist. She believes fiercely in the autonomy and self-determination of every person with a disability — including herself. As she puts it: no two people with disabilities are the same, and that includes her and her twin.

Allison and Elizabeth are two very different people, living on opposite sides of the country, shaped by different experiences but bound by twinship, CCM, and a shared determination to find a cure. CCM lacks the funding it urgently needs for treatments/cures, and a CCM community Please donate to the Alliance to Cure Cavernous Malformation. Tthe twins wrote this in 3^rd person so people could tell who is who.

Any and all donations will help us meet or beat our personal best of $2,040 from last year. Thank you.