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FOR ALMA
Rodoni of Novato and her two daughters, letting their hair
grow was a matter of helping others. They grew their hair
for more than a year before having it cut and contributing
it to Locks of Love.
Locks
of Love, a nonprofit agency in Lake Worth, Florida, uses gifts
of human hair to make wigs for children who suffer from alopecia
areata. Alopecia
is an auto-immune disease that causes hair loss. More than
4.7 million American men and women of all ages and ethnic
backgrounds are affected, according to the National Alopecia
Areata Foundation, headquartered in San Rafael.
Explaining
her interest, Rodoni says, "We are always looking for
interesting community service projects we can do as a family."
When
she heard about Locks of Love, she and her daughters - Julia
and April Aaronson, ages 12 and 10 - decided to grow their
hair and be donors.
Earlier
this month, they went to the Trico hair salon in Petaluma,
where hair designer Kathie Rothkop harvested their hair -
10 inches each from Alma and April, a full 12 inches from
Julia.
"My
hair now is a lot shorter than it's ever been," says
Rodoni, a high tech consultant who works from her Novato home.
"But I like it this way." She
says her daughters were nervous about the haircuts, having
gotten used to long hair, but now "everyone's happy."
The hair
was bagged and sent to Locks of Love, which will forward it
to wigmakers in Indonesia. The wigs will be donated to needy
children (under 18) who cannot afford to buy wigs on their
own.
Rothkop
has promoted the notion of hair donations ever since one of
her longtime clients, Sue Long of Santa Rosa, asked to donate
her hair to celebrate five years of being cancer free. When
Rothkop cut Long's hair, she made a videotape of the procedure,
translating it later into a video about alopecia with an educational
video company in Petaluma - Council for Community Television
- run by her friend Joe DeVito. The film now shows daily on
Petaluma's community access station, Channel 26.
Rothkop,
whose forte is designing fanciful wedding hairdos and earlier
made a video called "Bridal Styles Made Simple,"
had learned of alopecia when some of her older women clients
complained about thinning hair and told her how hair loss
diminished their self image.
Now she
would like to do a telethon, similar to the one Jerry Lewis
conducts for muscular dystrophy, where listeners would pledge
money to the Alopecia Areata Foundation or Locks of Love.
She would also like to recruit other hairdressers to give
free haircuts to those willing to donate their hair to Locks
of Love.
For hairdressers,
"it's a great way to build a clientele, upgrade your
image and give back to the community," she says. For
hair donors, "it's a great way to give without spending
money." For
both, "it's a way to support needy children and to bring
awareness to the broader public about the whole problem of
alopecia."
Educating
the public about alopecia is a primary goal of the Alopecia
Areata Foundation, founded in Marin 20 years ago by Ashley
Segal, then a college student who had contracted the disease.
Segal was a patient of Vera Price, now of the University of
California Medical Center and a nationally known expert on
alopecia. The first support group was held in 1981 in San
Francisco; the organization was incorporated later that year.
It moved from Segal's Mill Valley living room to quarters
in San Rafael and now occupies offices in Terra Linda. Its
executive director is Vicki Kalabokes.
The foundation
raised and spent more than $1 million last year on public
awareness and research. It also helps organize support groups
throughout the United States and the world, and once a year
runs a national conference attended by alopecia sufferers
and their families. The next will be held in Woodland Hills
in June.
The foundation
supplies medical information and psychlogical support for
young children struggling with hair loss, teenagers struggling
with dating issues and adults fearful that hair loss will
impact their careers. A foundation newsletter goes to 20,000
subscribers.
Lisa Gallagher,
assistant director, says the foundation works with the National
Institute of Health in a project to register genetic information
about alopecia sufferers, setting up a database for research.
The foundation also works closely with Locks of Love, which
Gallagher calls "a fabulous service" helping many
foundation patients.
Locks
of Love, which started small in 1997, has so far served 1,000
children, according to executive assistant Myra Reyes. The
organization was once a commercial wig-making firm, until
its board decided to become a nonprofit. Its president, Madonna
Coffman, had a 4-year-old daughter who suffered from alopecia.
Reyes
says it takes six to 10 ponytails to make one wig. "We
always need hair." Locks
of Love can not only use more hair, but is also looking for
more children who might need its wigs: "We don't advertise,
so our outreach is through word of mouth."
Rodoni
says her family got great satisfaction from the hair-growing
experiment. In an earlier family service project, she, her
daughters and her husband, Jon Aaronson, had bought large
amounts of Silly Putty, packaged it and sold it as a benefit
for a family in Israel. The project was part of Julia's bat
mitzvah preparation, and the family was one that had been
adopted by Congregation Kol Shofar in Tiburon.
As for
donating their hair, "it was a fun experience, completely
painless, but a constant silent reminder that you were doing
something for someone else," says Rodoni. She and her
girls are considering doing it again.
"It's
a great project for kids. Very visible, something you can
feel very good about, helping someone who is not as fortunate
as you. "We
hope what we did will stimulate a lot of other people to do
the same."
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