Lisa was a guest at webmd.com chat in April 2000 where she discussed a disease that afflicts her manager's daughter.

Moderator: Lisa Whelchel, The Facts of Life's stuck-up "Blair Warner," has passed on the Hollywood way of life in favor of life with her husband and three home-schooled children in Santa Clarita, California. Lisa will be co-hosting the Los Angeles segment of the Jerry Lewis Muscular Dystrophy Telethon on Labor Day weekend to raise awareness of a strain of Muscular Dystrophy called Friedreich's Ataxia (FA). Lisa, welcome to WebMD Live.

Whelchel: Thank you. Good to be here.

Moderator: How much money is allocated by the Muscular Dystrophy Association (MDA) for F.A. research?

Whelchel: At this time, they've allocated over $700,000 over the next couple years for research that is going on in Georgia, Louisiana, Minnesota, Texas, Montreal, and Toronto. In each university or hospital, they'll be concentrating on a specific research development.

Moderator: Is there someone in your family with Friedrich's Ataxia?

Whelchel: My manager's daughter -- she's 20, and was diagnosed 4 years ago. I've known her since she was 7 or 8. It's been around the family in the diagnosis, and they're dealing with it -- it's degenerating in her life, but a lot of good things have happened. She got married last year, but watching her and her family deal with it ...

Moderator: What services does MDA provide for people with F.A.?

Whelchel: There are so many really important functions that MDA provides -- the clinics are one thing. For someone who thinks they might have a muscular disease, they can get a referral by a physician and this is a clinic where they have a network of nurses and doctors and physical therapists, and anybody that they'd need. Even people that can then provide wheelchairs and leg braces, family support... they can get involved in the clinic to receive all the help they need -- physically, emotionally, families, educationally, everything they need at the clinic. They also provide education for the doctors. And if it's something not covered by the MDA, then they can say "sorry." They provide support groups and referrals for families of people that have the disease, and for parents, siblings. The most exciting thing I've learned is the summer camps. I think that's a highlight of these children's lives, because they have to adjust so much to the disease and they miss out on so much. But this is a place where they don't have to miss out, and everything is available to them there. And that's an exciting service. And it offers the parents a week to have it away, or spend with other siblings, and know their child is well care for. I'm sure the parents really need a rest.

Moderator: If you believe you have a neuromuscular disease, how do you contact MDA?

Whelchel: The best thing to do is call 1-800-FIGHT-MD. That will get you all the help you need, and direct you to the right place, right clinic. If you're looking for info, because you're not quite as concerned that you might have a MD, a good place is www.mdausa.org.

Moderator: What sort of activities does MDA provide at summer camp?

Whelchel: Anything that's at a regular summer camp -- they have sports, basketball, football, dancing, swimming. Swimming is a real wonderful feeling for these kids. They do everything from teepee cabins, to bonfires, to eat bad food ... and feel like a normal kid. And they also provide each child with a personal volunteer for one on one care, depending on where the disease is, whether they need to be fed and taken care of completely, or if they just need to be looked after like any normal 6 year old boy.

Moderator: What percentage of money is allocated to research and patient services?

Whelchel: This has been one of the most impressive pieces of information I've learned, and that's 78%, or 78 cents of every dollar goes to research and patient's services. So they're very careful with the donations that come in -- so much of it is done through volunteers, they're very careful with people's money. They can spend 78% on the summer camps, wheelchairs, braces, research. I think 40% of the total 100 is research.

gee_32_WebMD: Will you explain this condition and its symptoms and what can precipitate it? Thanks!

Whelchel: I don't think they know -- it's genetic, there's nothing that can precipitate it. What I understand is that both parents have to be a carrier of this particular gene -- if one is, they won't get it ... but if both are, it's still not even for sure they will. I don't think it is, because other siblings can not have it, and so it's very rare ... I believe it affects 5,000 people in the U.S. today, and it's an inherited, progressive disorder of the nervous system. The most prominent characteristic of the disease is ataxia, which are the shaky movements and unsteadiness. It results from the brain's failure to regulate the body's posture in the coordination of its muscle movements. Other common symptoms include loss of tendon reflexes, weakness of muscle, club foot. I guess if you're concerned about yourself or your child, the most common symptom is that you feel clumsy. You seem to trip over thin air, and you don't know why, and it's written off a lot of times as clumsiness. Then the next step is usually jerky movements; feeling very uncoordinated. I think that's usually the time that a parent will take a child or a person will go check it out themselves with a doctor. At that point, the doctors can run all the electrical tests, gene tests, muscle tests, to diagnose for sure if it's Friedrich's Ataxia, or one of the other 39 muscular diseases that MDA provides services for. There are different reasons why you might feel clumsy, but this would be the one we're talking about.

Moderator: When do the symptoms of Friedrich's Ataxia set in or become noticeable, age-wise?

Whelchel: Most typically between ages 6 and 13, although it can be diagnosed as late as the early 20s. My friend, Samantha Litke, was diagnosed early. Her family used this as an opportunity to jump in with both feet, and their talent and resources. They started a program called Seek a Miracle, or "SAM." They've tried to make people aware, tried to push through for more research, and SAM is what I'm involved in specifically.

Moderator: Approximately how many people are living with Friedrich's Ataxia?

Whelchel: It's 5,000 people in the U.S. and Canada. It affects 2 out of every 100,000 people. It's more common among French Canadians, but the 5,000 is only amongst the U.S. males and females are equally affected. And occasionally, onset can be as late as the 50s, but it's more typically before age 20.

Moderator: What treatments are available?

Whelchel: There really aren't treatments, and that's why a lot of the money is being poured into the research. There are some treatments, in that there are exercises -- sometimes the muscles spasm and can be painful. A lot of foot exercises, because it affects the feet quite a bit. That keeps things loosened up -- nutrition does help, but there's no treatment that's available at this time. There are exciting, hopeful advances as far as they've identified the gene; they're working on that to see if there's something they can do with gene therapy, to at least slow down the progression of the disease, but we're a few years away from that.

Moderator: Can you explain exactly how Friedrich's Ataxia is inherited?

Whelchel: Both the mother and father have to be a carrier. They don't know it usually, unless they have it themselves. There's no test that can be done either on the newborn child, or even one of the parents ahead of time.

Moderator: Is there anything that can be done if prenatal tests show that a baby has Friedrich's Ataxia?

Whelchel: No, not at this time.

Moderator: What surgical procedures can help patients with Friedrich's Ataxia?

Whelchel: Not at this time, because it is a progressively degenerative disease. It starts out as clumsiness and jerky movements, and you can walk around for a while with a brace or walker, but it could be gradual or rapid, but it's much the same -- it gets to where a person has to be in a wheelchair full time. Oftentimes from there, it then affects the speech so that there's slurred speech, and then difficulty swallowing, so they need to be careful about how they eat, and how the food is prepared. All the family members need to be skilled in the Heimlich maneuver, and sometimes the food can get stuck in the lungs. Then there's the risk of pneumonia. It affects the heart muscle, so about 90% of people affected by Friedrich's Ataxia die of heart disease. That's usually what eventually happens. There's a high percentage of diabetes, also. Thankfully, diabetes and the heart difficulties are treatable. You have to be aware and on top of it, but they can work on any heart irregularities to treat that and the diabetes.

Billy_de_WebMD: Do blood tests for the parents detect if they carry the recessive gene before they decide to have a baby?

Whelchel: If both parents are Friedrich's Ataxia carriers, they have a 1 in 4 chance in each pregnancy conceiving a child with the disease. They're not affected by the results of earlier pregnancies.

Moderator: Is Friedrich's Ataxia related or often seen with other similar or dissimilar conditions?

Whelchel: I think clubfoot is a similar condition, that could be related, muscle weakness -- there's all kinds of reasons you can have cramping, but muscle cramping and even stiffness and not being able to have good reflexes in your tendons. Those are all so general, and you don't want to decide that you have Friedrich's Ataxia... but it's a good idea to look into.

chartres_WebMD: Is Friedrich's Ataxia ever misdiagnosed? What would cause it to be misdiagnosed?

Whelchel: I don't think so, because I believe they'll take it one step at a time, from the regular doctor who will then refer you to an MDA clinic, where they're very familiar ... and since these are all similar symptoms, they're very careful and knowledgeable about what roads to go down, and they have some pretty high tech tests, as far as electrical tests to determine how much protein is in the muscles, and eventually they can isolate and find the gene. It gets technical, but something in the DNA structure, people with Friedrich's Ataxia have triplets repeating ... and the more they have, the further the disease is along. I'm not a doctor, but I believe you can really, by the DNA structure, pinpoint it without too much risk of misdiagnosis.

Moderator: How difficult is it for children living with Friedrich's Ataxia?

Whelchel: From my observation of Samantha, I think because of progressive degenerative, depending on the onset ... that the childhood can be pretty normal, other than just some clumsiness and jerky movements. Oftentimes, the childhood can be preserved just by, even if they eventually need a walker or brace, it's not debilitating. It's not the debilitating nature of the disease that happens until past childhood -- there are some limitations, but they don't lose their childhood by being confined to a wheelchair, unless in some rare cases, where it's diagnosed very young, then by the late teens they'd be in a wheelchair.

chartres_WebMD: What do you recommend for parents who have children suffering from Friedrich's Ataxia? What schools? What therapy? etc.

Whelchel: I would recommend immediately calling 1-800-FIGHT-MD, because I have been so impressed by the support and services available to families. Jerry Lewis and the whole organization are just an incredible humanitarian group - they know what the parents and the children need, and they provide it. Their support groups are important, and also the summer camps -- that's such a highlight. I believe most of the children are mainstreamed into schools, and because it does not affect the brain, or the emotions at all -- there is no degeneration there. Someone far along in the progression of the disease physically, is just as sharp mentally and emotionally. I guess people treat them as if their brain is degenerating at the same time, and that's frustrating. Whatever school situation that they'd normally be in, the schools would be able to accommodate their physical limitations.

Moderator: What can parents do to make it easy on a child with Friedrich's Ataxia?

Whelchel: Because I have not lived through it, I'm only speculating ... but I think it's important that through the support groups, to find other children that they can identify with, and know how they feel, someone to be with, that has the same limitations. And that's one aspect of it -- which is to find someone like them. The other aspect is to treat them as much as possible without any difference as they would the other siblings. I would guess that the balance of both of those would be very important.

SCauble_WebMD: When and where are you hosting the Muscular Dystrophy Telethon?

Whelchel: Labor Day weekend; this upcoming year 2000. I'll be one of the few hosts for the local Southern California Telethon. 40 minutes of every hour is the national telethon, and 20 minutes is devoted to each regional area. It's an important 20 minutes. Although the telethon is the main fundraiser for MDA, there are so many local businesses that have worked all year long to raise money. And so it's an important time to recognize the local community efforts to raise money and support. They do a really fun thing where they jail local executives with a phone, and they have to call in all their friends and markers, and get a certain money pledged before they can get out of jail. That's what I'll be involved in this upcoming September. I've guested on there before, just as a 5 minute appeal, but this will be my first year as being up all night long.

Moderator: How did you get involved with the Telethon?

Whelchel: Specifically through my relationship with Samantha Rose, and her parents, and their involvement. It's really sad, but it's human nature -- until it really affects you, we often don't care... or we do care, but not enough to do something about it. I was just as selfish as anybody else, that I'd rather by spending my weekend out by the pool on Labor Day, until it hits home. That's really nothing compared to giving up your time, and in my case, being part of the telethon and being able to do what I can. Just like someone who's an RN or a doctor can give up their time to volunteer to the MDA. And my hat is off to those volunteers that give up their time and talents, because they care about human beings in general, and didn't wait until it got personal.

Moderator: Is the research being done on Friedrich's Ataxia adequate in your opinion?

Whelchel: I believe that like anything, it has to do with the amount of money available. It's more than adequate for the amount of money that comes in, and how well they allocate the money -- the breakthroughs that have happened recently is a real tribute to that. I've read something the other day that was pretty mind boggling, that 40 dollars buys 1 minute of research. That's a real commendation for people that send in their money -- if they can allocate 750,000 dollars specifically to Friedrich's Ataxia research, which is 1 of the 40 muscular dystrophies that MDA provides research for, then there's a lot of people out there giving up their money to help someone else.

Moderator: How can I support research on Friedrich's Ataxia?

Whelchel: You can either donate directly to the MDA, and if you want to, specifically write either on your check or letter of donation, that you want it earmarked for Friedrich's Ataxia, then do that. The Seek a Miracle Foundation, which is specifically for Friedrich's Ataxia... they're having a big pre-telethon for all the 40 neuromuscular diseases, but I'm writing a book now, which will be out about that time, but my manager told me to write a book and donate it, and everything we sell, every ad ... is specifically going to go to Friedrich's Ataxia research. You can be very specific in your donations.

Moderator: Is heart failure a serious risk among even younger patients with FA? Whelchel: Yes, it is. You have to be real careful identifying ages, but I believe that because of the degeneration of the heart muscles and the symptoms that occur because of the disease, that ... it's pretty young, as far as when they would die. It's like 35 or 45, depending on when they're initially diagnosed, the onset, and how rapid the disease is.

Moderator: Are there drugs available to slow the attack on the heart?

Whelchel: There are drugs available, if there are irregularities or the arrhythmia ... there are drugs available to help that. Like any person that doesn't have Friedrich's Ataxia, that has an irregular heartbeat, you can treat that ... but it's still affecting and wearing down the heart, and will probably, eventually, result in a heart attack.

Moderator: Do you foresee a cure for FA in the near or distant future?

Whelchel: If our prayers have anything to do with it. But there is research going on, and a lot of things happening -- it's hard to tell, to determine that, but I don't think they're so close now, that we can say hallelujah yet. I think they'll probably find ways to slow down the disease, before they can find ways to cure it.

Moderator: How can parents deal with FA?

Whelchel: I would guess that having the support from the support groups would be very helpful, and I'm only guessing ... but I'd say that receiving as much education as you can on the disease oftentimes helps, when you're not so much in the dark. Getting as much information from MDA as possible to just educate yourself too. Personally, any crisis that I've ever had to deal with ... I've leaned very heavily on the fact that we serve a God who's very powerful, loving, and who we can trust. Even when bad things happen to good people, but in my experience, good things can come out of it. My husband fell off the roof three months ago, and broke both arms and his leg ... and that's been a huge crisis for us, but a lot of good things have come out of it. That doesn't compare to something ongoing or life threatening, but it's the same God who's helped us through it that will help parents and children through anything.

chartres_WebMD: I'm sorry if this has already been answered, but I tuned in a little late. Do you currently suffer from FA? And how has it affected your life?

Whelchel: It's a young girl named Samantha Rose Litke in New Jersey who's a friend of mine.

the_ref_WebMD: I think it's great that you are using your celebrity to bring attention to such an important cause. Do you think that celebrities should be more involved in things like this?

Whelchel: Thank you, for the encouragement. It's been my experience that many celebrities are involved, and use their platform to help other people, and it really depends on what affects their life personally, either directly or indirectly ... that they contribute their time and talents to. Especially for celebrities. We've been given so much in the way of platform, money, and voice to be heard, that we really should give back. This is just one of the ways that I'm grateful to have helped out.

Billy_de_WebMD: How much has your life changed since you were a young actress?

Whelchel: About 180 degrees. Everything is different. The last episode of Facts of Life aired in 1988, I got married in 1988, had a child in '90, '91 and '92. I became a full-time mom and have home schooled my children. So everything is different.

Billy_de_WebMD: Y our web page www.lisawhelchel.com says that you home school. How do you feel this helps your children compared to a private or public school system?

Whelchel: I obviously think home schooling is a wonderful opportunity for my children, to focus on their strengths and their weaknesses, and to give me the time when they're young, to pour into them good Godly character traits that take time to develop, and being there to train them. But I do feel strongly that there are things in a school situation that can't be taught in a home environment, that are important. I don't think there's one way for any family, and there are pros and cons for both, and I feel that the pros have outweighed the cons in light of homeschooling, because my children have flourished as young people and academically. But I am considering putting them in a private school next year, so they can learn about the backpack, interacting with other students, and all those other things they need to learn. Home schooling affects them dramatically, but we can have the best of both worlds. The next year we're leaving on a trip around the U.S. next year; we're going to get a RV and we're going to go see America. So they'll have a totally different school experience. I lean towards the unorthodox, but not that I don't see great things that can happen in the orthodox, traditional school system. We're going to leave the summer of 2001, so it's getting closer everyday.

Moderator: In your opinion, would it be of greater benefit for a child with Friedrich's Ataxia to be home-schooled or to attend a public school?

Whelchel: This is a hard question, because I do believe so strongly in the benefits of home schooling. But I'd almost guess that because they would feel different anyway, because of their physical limitations, that it might be nicer for them to be in a traditional school system, so they can feel like a "normal" kid, and be able to do more activities. They could be involved in a school situation, from choir to drama, to speech and debate, orchestra... there are a lot of things that they can be involved in, so it might be more beneficial in a traditional school than home school. My kids have the options for gymnastics class, baseball ... but I think they'd be more available for a child with Friedrich's Ataxia, perhaps even in a traditional school system, and just to be one of the gang.

chartres_WebMD: When was FA first diagnosed?

Whelchel: This was a very interesting piece of information -- it was diagnosed in 1860 by a German neurologist named Nicolas Friedrich.

chartres_WebMD: Is there a relationship between FA and epilepsy?

Whelchel: I haven't read of any in my literature.

chartres_WebMD: Is there a relationship between FA and muscular dystrophy?

Whelchel: FA is a strain of muscular dystrophy. I think the most recognizable muscular dystrophy strain that's usually related to MDA is the Duchene dystrophy. That's usually the children you see in the telethon that are in a young wheelchair, at a very young age. Survival is rare beyond the twenties. Friedrich's Ataxia is under the diseases of the peripheral nerve; even with muscular dystrophy, they fall under different headings, from the umbrella of muscular dystrophy diseases ... motor neuron, myopathies, endocrine abnormalities, hyperthyroid can affect muscular diseases, metabolic disease of the muscle ... so there are a lot of diseases that affect the muscle, that MDA cares and provides for.

Whelchel: They're caused by varying parts of the body.

Moderator: How important to the funding of Muscular Dystrophy research is the Jerry Lewis telethon on Labor Day Weekend?

Whelchel: It is the main fundraiser, so it's very important to it. Alot of times though, they cross over in that a company, if it's able to have either one of the little places where people can donate money at their business, or if they have a golf fundraising event, sometimes bowlathons. Alot of times businesses will bring the money to the telethon, to present it there. That money didn't come from the telethon and people calling in, but from local businesses ... so they do cross over. It's still the main one.

Moderator: Do you know how much money the telethon raises per year?

Whelchel: I think it was $120 million last year. It was a record amount.

maltman_WebMD: I recently watched a special on "The Girls of Facts Of Life" on E! Entertainment Television. Do you still see or speak to any of your former co-stars?

Whelchel: Occasionally -- we've all really gone so many different separate ways, but on different events -- we did have a ten-year Facts of Life reunion party, and I was able to see some of them then. Nancy McKeon and I make an effort to see each other, even though that's rare with our schedules. The other girls I see just on different events that our paths cross, and certainly not because we were anything other than good friends, but our paths don't go the same way right now. So there is talk about a Facts of Life reunion next year for the television. I doubt Nancy would, but since I'm not trying to do anything but be a mom, I could use the extra money.

Moderator: Would you make a return to television other than a Facts of Life reunion?

Whelchel: I have nothing against going back into the business if I could still be a full time mom, and that's possible, but it's rare and I'm not pursuing that. My manager is retired, and I'm retired ... so if something comes in, whether it's a guest appearance, then I'd consider it. I just finished writing a book, and I'm doing my second one now, and that actually makes me put the kids into a separate room ... so that takes away more time than I wanted to. So I'm not anxious to get busier.

Moderator: What are your books about? When do they come out?

Whelchel: The first is called "Creative Correction" and it's a parenting book with discipline ideas other than time-outs or spankings. There's a lot of people that don't agree with spanking, and once your kids get past a certain age, and it's not okay. This is a book full of ideas from motivating them with incentives and rewards, to correction ideas and variations from the time-out theme, to inspirational and motivational stories to accepting and welcome failure as a teaching opportunity. So it's a book on child discipline -- I've had to get creative. My son was diagnosed with ADHD, so it forces you to get creative on your discipline. ADHD is Attention Deficit Hyperactive Disorder. The second book is called "Beyond Bible Stories" because my kids were raised in Sunday school, they've heard all the typical bible stories... and yet, that's what they were taught over and over again, so there's a lot of great stories in the Bible, that aren't taught to them because they're not as colorful as the traditional stories, so these are the "hidden" ones that are still adventurous and wonderful, that can still apply to a child's life.

Moderator: And the first book comes out around the same time as the Jerry Lewis telethon, this Fall?

Whelchel: October. The telethon is in September.

Moderator: What advice would you have for families dealing with FA?

Whelchel: I couldn't stress strongly enough to call 1-800-FIGHT-MD, to look at the website -- www.mdausa.org, and to take advantage of the support groups. MDA is so generous monetarily -- anything not covered by your insurance, they take care of. They make sure your child has the wheelchair or the brace, or therapy they need. They make sure your family has what it needs, even if the insurance can't cover it. It seems like a small thing, but whatever you can do to get your child into the summer camp ... from what I hear, the kids talk about it 6 months before the camp, and then 6 months after the camp.

Moderator: When was the MDA founded?

Whelchel: I believe since the 50s. I would just implore people that even if they're not affected by it directly, if they have anything extra to give, whether it's time, money, or prayers... involvement even, in any way... not to wait until it gets personal, but to give. These children aren't just faces; they're lives that are affected every day by a vicious disease, and we can really make a difference in their lives. Whether it's time or money, prayers or caring, it's not just thrown out into the wind, but it'll directly touch their lives for generations. What we give now, we believe will bring an end to this disease through the research going on right now. A small amount is able to touch many lives on a lot of different levels, I'd encourage as many people as I can to give. The number is 1-800-FIGHT-MD, and the website is www.mdausa.org. It's not ".com."

Moderator: Lisa, thank you for joining us.