Fox Chapel woman works to raise awareness about genetic disorders
Lorna Irvin saw a need and stepped up to the tee to fill it. As she and her committee prepare for the NF Golf Challenge next Monday, "Doone" Irvin is on course to meet her goals.
Irvin developed the golf fund-raiser to shoot up the standard of neurofibromatosis.
The Fox Chapel resident wants to spread the word about this disease and help those afflicted with it.
"It's my mission," Irvin said. "There's a lot out there I can do to helpsomeone."
Neurofibromatosis or NF is a pair of genetic disorders. There is no cure ortreatment. About one in 3,000 babies is born with NF and 100,000 persons in the UnitedStates are diagnosed with it.
Irvin said NF is a problem with the nerve sleeve. It is a neurologicaldisease caused by one gene. The damage can manifest itself internally or externally on theskin. Some of those afflicted with it develop neuromas, growing bumps on their faces. Children diagnosedwith NF have learning disabilities commonly and eye problems, too.
"You don't know how it manifests itself," she said.
The Neurofibromatosis Clinic Association is working to educate both thepublic and doctors, Irvin said. The first-year medical students at University ofPittsburgh listened tostories of the disease and the anguish of patients and family.
"It's hard to imagine what it's like to live with," Irvin said.
This intense psychological pressure is why the proceeds of Irvin'sfundraising are funneled to pay the salary of a social worker who specializes in helping NF families.
Not only is it vital for the children and their loved ones, but also the NF clinicAssociation is unique in raising money privately for this purpose.
Irvin is aware on a gut level of how hard NF can hit a family. As with abouthalf the cases, Irvin's grandchild developed NF without a family history of any geneticproblem. Irvin called Cornell McMullen, the founder of the association, in 1995 - just to getinformation. The next year the outing for women golfers teed off.
"Sticking with what I know best," Irvin said,
The golf match is held at Deer Run Golf Club, but most of the committeeworked with Irvin organizing the U.S. Open. Work begins in January with dinner meetingswhich are fun. Each month the committee creates a raffle basket such as a 'baby' or awine basket to be part of a ticket auction. The raffle is held at the end of the dayalong with hor d'ouerves; lunch is on the course in the middle of the shotgun play. It's agreat day for a wonderful reason.
Although she is the director, Irvin takes the responsibility for contactingall patrons personally. The work energizes her.
"Everyone should have a purpose in life," she said.
Helping people is her primary purpose. She is acting as a caregiver for herhusband, too.
For her people are important. Energetic, the avid golfer had to take a hiatuswhile recovering from an athletic injury. Although she said she is extremelycompetitive, it was the people she missed more than the play.
When Monday comes, there will be fun which shouldn't be missed -- and for a good purpose.
Additional Information:
Details
Name: Lorna 'Doone' Irvin.
Age: 59.
Hometown: Fox Chapel.
Current project: Director of NF Golf Challenge.
Of note: Raised $300,000 over the last 7 years.
Stress reliever: Golf.
Favorite vice: Hot sauce on everything.
Fantasy dinner guest: Barbara Bush.
Sideline: Selling Christmas trees.
Volunteer effort: Meals on Wheels.
