Newly diagnosed with a deadly genetic disease, Palo Alto entrepreneur Ben LeNail walked into a conference of fellow patients and was stunned by what he saw: a tableau of young boys in wheelchairs, profoundly disabled and hopeless.

In shock, he turned and walked back out. Then he stopped, and returned. And vowed to make a difference.

“‘Go back and make friends,’ I told myself. ‘It’s the same disease,’” he said. “I realized that we’re not so far apart.”

With limited time but enormous talent and Silicon Valley know-how, LeNail has shifted from grief to activism for those less fortunate, mobilizing his 25 years of technology and startup experience to accelerate diagnosis, treatment and awareness of a rare and little-known neurodegenerative disease. It’s called adrenoleukodystrophy, or ALD.

ALD is one in a family of genetic illnesses that destroys the myelin, or insulation, that allows brain cells to communicate with one another. Affecting 1 in 16,000 males, there are few treatment options, as dramatized in the 1992 movie “Lorenzo’s Oil.”

About half of cases appear in childhood, causing normal healthy boys to quickly go blind and deaf, lose motor control, develop seizures and dementia — dying within three to five years. The only therapy is stem cell transplantation, and it’s risky.

The other half of cases typically occur in young adults, ages 20 to 30s, and progress more slowly.

Then there’s LeNail.

Now 51, he didn’t experience his first symptoms until age 38 — time enough to build an impressive resume and Rolodex. He exercises, mentors, entertains friends and directs business development at Alta Devices, a Sunnyvale company that manufactures thin flexible solar cells. He was previously a distinguished visiting scholar at Stanford University and senior director of corporate development at Sun Microsystems.

A lifelong athlete, he was puzzled when his legs began to feel leaden while jogging the leafy streets …read more

Source:: The Mercury News – Health

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