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Handok presents rare illness adrenoleukodystrophy organization with Lorenzo’s Oil

  • Date
    2017.02.27 00:00
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    4,493

Handok
presents rare illness adrenoleukodystrophy organization with Lorenzo’s Oil

Handok presented the Adrenoleukodystrophy Organization
(Chairman Soontae Bae) with Lorenzo’s Oil, a medical nutrition at the pharma
company’s Yeoksam headquarters to convey goodwill towards the patients suffering
from the rare disease.

Adrenoleukodystrophy, many times referred
to as Lorenzo’s Oil sickness, is a rare disease where the body cannot break
down long chain fatty acids, causing it to pile up in the cells. This can lead
to brain infection, loss of sight and hearing, paralysis, and eventually death.
There are approximately 50 patients suffering from the disease in Korea. There
is no known treatment for adrenoleukodystrophy and the Lorenzo’s Oil diet is
known to be effecting in inhibiting the piling of long chain fatty acids that
destroy neurons.

From November 14, 2016 to January 2017, Handok,
together with the adrenoleukodystrophy organization and the Happy Foundation
carried out crowd funding on Naver Happy Bean to secure funds to purchase
Lorenzo’s Oil. Handok also promised that it would also donate supplies of
Lorenzo Oil equivalent to the sum collected through the crowd funding. 2,441
people participated in the crowd funding, going over the initial goal of KRW 5
million and securing KRW 8 million. Handok’s matching grant allowed KRW 18
million worth of Lorenzo’s Oil to be donated to the adrenoleukodystrophy
organization.

Soontae Bae, the chairman of the Adrenoleukodystrophy
Organization, stated, “Our supply of Lorenzo’s Oil ran out which brought
financial hardships on the patients. The warm deeds and love from the people
gave the patients,” adding, “The Korean government still doesn’t provide
support for the purchase of Lorenzo’s Oil. We desperately hope that we will be
able to receive support for the purchase of Lorenzo Oil even if just until a
cure is invented.”

Heehyeon Jang, director of Handok’s New
Business Incubation Department, stated, “The invaluable donation collected
through Happy Bean came in small sums of KRW 200 and 300 from many netizens,
and the Lorenzo Oil being presented to the Adrenoleukodystrophy Organization is
the world’s most beautiful oil,” adding, “We hope the donation brings some
relief to the patients suffering from adrenoleukodystrophy and wish that people
take an interest in people suffering from rare terminal illnesses.”

Lorenzo’s
Oil is a medical nutrition supplement created by the parents of Lorenzo, a
child suffering from adrenoleukodystrophy. The story of the family was made
into a film called, “Lorenzo’s Oil” in 1992. Chairman Bae lost his firstborn
son to adrenoleukodystrophy. When his second child was diagnosed with adrenoleukodystrophy,
Bae started treating his child with Lorenzo’s Oil, even back when the oil was
not imported into the country. While Bae’s second son is bedridden, he is still
alive even after 23 years. Bae founded the Adrenoleukodystrophy Organization
and provides information and counselling to adrenoleukodystrophy patients and
their families. He also engages in other activities to help out adrenoleukodystrophy
patients such as actively communicating with the government so that people can receive
support from the government when purchasing Lorenzo’s Oil.

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