Allison Mintz's Fundraiser
30 Miles. 30 Days. One Mission - Better Treatments and a Cure for CCM.
Two Sisters (twins) Two Paths, One Fight for a Cure
Allison Mintz
"$30 30 days 30 miles for my twin, fellow CCM warriors (family too) & myself + our families.$8 = my 8th Spinalversary on 06/14/25 with Dr. Steinberg."
$38
Lauren Goodkind
"You both are inspriational!"
$25
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Steve Einstein
"You Mintz sisters are truly two remarkable women. You literally walk the walk. Many thanks. Steve and Karen"
$50
Daniel Newbrun
I donated in support of this campaign.
$50
As kids, we didn’t like being called “the twins.” We wanted our own identities—two different people, not two peas in a pod. But as we grew older, we didn’t mind it as much. Being twins didn’t make us less individual—it made us stronger and unique.
But when it came to our health, neither of us wanted to be “first.” Yet it was Allison who received the first diagnosis—after eight years of unexplained symptoms. It began with numbness, tingling, and pain while serving in the Peace Corps in Mongolia. Doctors dismissed/gaslite her symptoms until a sudden crisis revealed the truth: Cerebral Cavernous Malformation Type 2 (CCM2), a rare genetic condition that causes clusters of abnormal blood vessels in the brain and spinal cord. These fragile vessels can bleed, leading to seizures, strokes, paralysis, and even death.
Allison needed urgent spinal surgery. Dr. Gary Steinberg at Stanford performed the procedure, which may have saved her from serious complications like paralysis—or worse. Despite years of uncertainty and ongoing challenges—including pain and balance issues—Allison became a lawyer. But her CCM journey didn’t end there. After becoming a lawyer, she began experiencing seizures, adding another layer to her fight.
Both of us were born with developmental disabilities and learning differences. But Elizabeth’s health changed dramatically after she got COVID, which triggered severe seizures and worsened her symptoms. Her world changed almost overnight. It was Allison who introduced her to the Alliance to Cure Cavernous Malformation—a community that gave her more than information—it gave her hope.
Unlike Allison, Elizabeth didn’t need surgery, but she faces CCM differently. Her nuro-divergent disabilities—including Autism, OCD, ADHD, and balance issues—became more severe over time. Despite this, she became a caregiver, supporting seniors and people with disabilities. Even while managing her own health, she helps others maintain their independence.
Two sisters. Two lives transformed. But one fight.
Our form of CCM2 is linked to a genetic founder mutation common among people of Jewish ancestry. It’s a disease that can strike without warning, leaving us one bleed away from life-changing symptoms.
But we’re not facing this alone. The Alliance has connected us with patients, caregivers, and researchers working toward a cure.
This year, we’re fundraising together—because it’s not just one of us fighting; it’s both of us. And we’re asking for your help.
Your support can accelerate research, improve treatments, and bring us closer to a cure.
We are twins.
We are cat mamas who want be around to take care of our kitties, and spend time with family, friends, and other CCM warriors.
We are survivors.
We are CCM Warriors.
We are advocates.