I first met Ellen 12 years ago. We shared a disease
- endometriosis - and we shared a vision to empower
women with endometriosis through information and knowledge
to enable them to make informed choices about their
treatments. We used the Internet to fullfill this mission,
and have worked together at EndoZone.org and at Endometriosis.org
to reach hundreds and thousands of women with endometriosis
across the globe.
The thing about Ellen was that when
she saw a need, she filled it by writing. When she had
to endure a "bowel prep" the night before
her first endometriosis surgery without a clue or a
single baby wipe, she knew she had to give other women
tips for getting through it more easily! She has continued
to provide this website with articles on almost every
single aspect of "coping with endometriosis".
A former support group leader, Ellen's theory about
getting through health challenges was: put one foot
in front of the other, take it one day at a time, choose
hope above all other alternatives, and pray.
In a statement released by her family,
Ellen is described as a woman who "loved life,
God, her husband David LeRoy Johnson, her devoted family,
her incredible friends, the great State of Texas, buckwheat
pancakes with real maple syrup, warm socks, being a
girly girl, experimental cooking, good movies, and a
well-written sentence. Throughout her journey with cancer,
her faith rarely wavered. She remained steadfast in
the belief that while this was not the path she would
have chosen, it was certainly the path she was intended
to travel."
The Endometriosis Research Center (ERC)
has announced the establishment of a Memorial Fund designed
to honor and celebrate the life of Ellen.
The Ellen T Johnson Memorial Fund is
intended to help off-set some of the costs of surgery
and expenses for women and girls seeking endometriosis
treatment.
Women and girls with endometriosis
often find it necessary to seek care outside their local
health system for effective treatment, and those specialising
in the treatment of endometriosis are limited in number.
Obtaining such treatment often incurs cross-country
travel and significant costs not covered by a patient's
insurance. The ERC wishes to honour Ellen's memory by
continuing to help others get the care they need in
her name.
The Ellen T Johnson Memorial Fund will
be supported through tax-deductible donations to the
ERC in Ellen's name. The funds will be disbursed on
a case by case basis as permitted to disadvantaged patients
in need of effective endometriosis treatment. The foundation
has also already received a service commitment to the
Memorial Fund from one of the world's leading endometriosis
treatment centres, and is seeking additional support
from the healthcare community to offer similar services
in conjunction with the fund.
This is a befitting memorial to Ellen.
I know she would have wished this, because she championed
the best care for those with endometriosis.
Ellen was a great friend and a great
collaborator. I will never forget her. Remembrance Sunday
will for me always be for Ellen.
Lone Hummelshoj
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