welcome to discover a new future a show gary that empowering women to be the best versions of themselves i mean i was fake elice ls is a disease that impacts over six thousand individuals each year in the united states and it's one that significant impacts not only the individual that is diagnosed but dead entire family today we are having two wonderful ladies here who is going to be talking about you know less and its impact on the family especially children there are so many children were called her we were referring to them earlier today as the forgotten children who are caregivers for their loved ones who have been diagnosed with this illness so today i'd like to welcome both jody or donald if i got it right yes thank you ok and  both ladies are from whole cloth company and judy is the founder executive director of the organization and nancy is a director of communications so i just like to welcome ladies on and on here before we  terminal there is no known cause or cure and basically what it does is it takes the muscles all muscles and causes atrophy so that a patient loses the ability to walk talk use hands and eventually speak and breathe wow so i like to refer to it as m s on steroids wow and it is very quickly progresses very quickly and your patients live on average two to five years post diagnosis so it's a very tragic yes wow so what what brought you to this juncture in your life where you were an advocate for children yes so i was the normal twenty nine year old happily married with a toddler in my life and my husband kevin and my late husband kevin started having symptoms he had twitches when he went to bed he tried to play football and couldn't run properly he tried to skiing couldn't stay on skis he had skied since he was four years old and he said hind something is seriously wrong when eight months later after seeing many doctors we learned that he had a less well and he lived a very heroic battle it was an amazing man and lived five and a half years with a left before he passed in two thousand and one  w did that impact your family because i think this is a young man i talk to people every day every day who are now going through this and anyone who's been a caregiver short term or long term knows the impact that that takes on a life that means that in addition to regular daily routine living and the things that we have to do this means that you were at some point someone's legs someone's hands someone's voice kevin was paralyzed and vented he was speechless and he needed before he passed he needed twenty four seven care so the impact is huge you think about all of the things that you can do independently thank god  raising your kids running errands going to get food cleaning the house you know sending holiday cards whatever it might be paying your taxes and adding to that the enormity of not only watching someone suffer with the disease and lose everything but to try to maintain a quality of life for them and be there there's their you know the their caregiver the advocate the way it takes it is a huge impact on the family and our our slogan and hope love company is because if you live with a less so does your family everyone's involved and i equate it to in some cases the short term experience that someone in the military has a parent is overseas and typically it's a known fact that the children who were old enough to lend a hand you know they're doing more chores there may be picking siblings up but you know they're filling that need for the the absentee parent and  with a less our children are doing that we have we have a our ambassador sometimes is up at five thirty in the morning before school to get her mom out of bed wow children and the children are so one onboard they're at a point when they're growing and they need their parents they need all guidance six said rob but you can't be everything to everyone right and that's no fault to anyone you know i know patients don't want to hear that that is the case or or will do anything or not make that the case in the last thing that they say is i don't want to be a burden to anyone patients are so amazing and caregivers are so amazing and they're working so hard and everyone's trying to balance it but one plus push comes to shove i have always said that if my daughter alina who was two and a half to eight during kevin's illness if i had to decide whether to go with her to a birthday party or be in the hospital for a week after kevin was vented because he could no longer speak and no one could understand him and how could i leave him in the hospital room by himself without a voice right or the ability to switch a button that i was with him because i knew my time with him was limited and i also knew that there wasn't there was no one else that other people had to work other people had to do things and this was my life he was my life and and so it is it's hard you have to you're pulled in so many directions and you do the best you can and that's all we can do examine the situation is the best we can and i tell my families all the time you're doing the best you can do we all have good intentions we're just doing the best we can  grandchildren of patients living with a l s there are other organ there's organizations that are supporting children who are caregivers to to family members and parents with other diseases but l wonderful organization and there i had a group of children who had grandparents living with ayla and i bought a book what did you learn today and we gave it out as gifts to the children  attendance and the woman who wrote the book was to tina singer names and she lost her battle to less than six months her widower and children brought the book  we all became friends and two years later we married and our three children alina nor an adam were at our wedding party and the so it's a it's a great story and i'm so blessed to have an amazing family and wonderful children but in that time period of after being married and before starting hopeless company i recognized the need my children had a all three experience a loss before the age of eleven twelve and speaking to a counsellor or an adult very pissed was something they had the option to do fortunately but they needed to be around children who understood they wanted to reach out on in the way with that was and was comfortable to them especially as they became teens so and they didn't have that so i vowed to create that once i knew my three children were adults and on their way in a good place and that's what i started and no use you provided services to you were saying to a strong the entire united states and its people you will  earlier words believe so in the midst of all that chaos i recognized that misery loves company and if i surround myself with people who are miserable and complaining about everything then i just couldn't function i mean i would be depressed but as long as i felt uplifted and surrounded myself with positive people with who who had hope and i felt hopeful right even though i was my husband did not survive the disease i was still able to have love in my life and blessings in my life and nurturing and positive friendships and when i look back i say this honestly it was the best of times it was the worst of times i just was speaking with our young investor this morning who was talking about you know her mom's so she's losing her mind and i said you know i remember giving my husband sheila gee and wow to be honored to honor him that way and to be someone's hands and someone's feet and to love them unconditionally that way it is huge i will never be able to do that for another human being again so not in that way not in that way so i did find blessings in him and that's where we came he met with the name hope loves company  the thank you so nancy tell us a little bit about your involvement in hope love copy what do you do well at the actually one of the things that help us company does is like she said she started with sending them out to the children to let them know that we're here for them you know to let them know that someone cares and that they're not in this alone i came on to hope loves company a few months back after  struggling with being in a job that he did not want to do and wanted to find purpose in my life and connect it with her through my sister and it definitely was meant to be i as an adult i had lost parents at an early age and i could relate to what it was like to be a caregiver it was a different situation a different disease but it can necked it to me that there is a need and when i was younger i didn't have anything like this and it hit home to me just to be able to be there to lead kids know that they're not alone and it is difficult isn't it measure mentioned children have enough in today's time just to ok it is stressful not but when you have to do the cooking and you have to do the cleaning and you have to be a parent and when you want to be just a child like that extra pressure the guilt the anger that goes through going through this  you know it's a struggle so sending out the care of hope packages it just is just a gift it's such a blessing you mentioned we do camp h l c where it's a free weekend respite for the r kids and their families to come kids to be kids for the day but there are we have group sessions support aren't therapy team building skills and it's an awesome weekend to have kids just come and be with other kids while enjoyable tell you were the one girl who as she said she didn't have to explain to anybody else what she was going through as they can understand there is actually one of our  one of our campers the first time she came to care and she lives in connecticut and she's such a sweetheart she said it was the first time in year and a half that i didn't have to explain ls to anyone and we just received a message from her yesterday thanking us wow and saying you know thank you for starting this because and i'm at the point now reaching out and helping other younger and home about this when it all out  cry cause they actually were miscarriage today for the first time so yeah it's it's it is powerful and that is really what we're trying to do in a not shell is not only give our children the skill set and the the needs to handle this situation to the best of their ability and understand grieving is normal you know and the steps of grieving and change the outcome unfortunately yet we will have a cure some day by a judge for now to speak to survive and be there for each other and that's and i think that's them foreign thing i remember back and being that sense of isolation that you feel when you're going through something as devastating as that and these kids have such a connection and to see that is powerful and to know that they're there for each other that support system at such a young age that sometimes we don't learn until we're done so unfortunately but just to know that they are that they're not alone that they have that support and it's just a beautiful thing to s working on statistics but we don't have any to date that are specific to a l s but we can say that eighty five percent of church of adults have children so if that that being said approximately eighty her can through her program she lost her father when she was in her late forty's or her early fifty's and she said then it was so horrible and so difficult that she supports can be chelsea  so we have an average campaign has between forty and sixty members coming and you know when you talk about the impact it's hard to say because you don't know if one family member i mean we even had if we had a patient and his and her husband come to camp from florida they have six children even if coming to that camp to experience that because it was a very late connection and we didn't have the means to bring the whole family over but they will come to the next one even if they go back from can't pay having met other people having been in that situation for a weekend and talking to other parents zene with how the children react and even if that they bring that back exactly right exactly so to indirectly is a whole nother thing to say what is the impact of that experience well what if those six children get a better understanding because of patient and her husband's experience at camp they bring that back then they bring it to their school bus and their friends and they say  we just learned about this and you know what we have a different outlook or we we have faith in this or we you know we can help my mom get through this so the impact can be wow and that's the thing that's what's so special hold loves company two is that there are so many things connected with us that is research research and you hear all the money's going for research and we hope that there is a cause you know a cure one day but the thing is is that hopeless company is for the children and everything that comes in from the books to any donations goes directly to that and spreading the where innocent letting people know that we're here for those kids that th is amazing in itself so that when we had a fundraiser that was the worst time to have it wasn't a great turnout but at that event there was a young girl who whispered to her friend i have sailed us wow and we she was unable to come to the camp but her brother was and sweet little ten year old son don't make me cry about it but that was amazing for him and his father his hand and he came up to us at the end of camp and he said i need to thank you i'm going back and telling everyone about this i believe in what you're doing as a man ten years ago and even said he was like i'm going to talk to my principal about doing a fundraiser  matter fact i just want to share his mom recently reached out and thanked us for what we're doing and she said he and i have decided that this is all and this is all just an amazing thing that we talk about  turns volunteers for a variance we have ongoing fundraiser so if anyone has ideas for fundraisers and can help us implement them that is wonderful we have a need for volunteers at camp h l c professional  is we have a camp coming up in may which is in new jersey we have camps in indiana and massachusetts coming up this summer and we have a fall camp in new york obviously donations of time donations monetary generations are welcome as well if you're looking for a unique niche for for you were advocacy this is a great way to do something different as far as professional s we always need help with so we need interns for i t t for marketing for donated items we are care packages that nancy so eloquently spoke about we like to have a stuffed animal we have a t older children would be really appreciated what else and it's well and i think art martin has as you know when you do you like us on facebook it's spreading the awareness then obviously you know the monetary it's a small grassroots i mean it's it's me and jody have been you know running around and having lots and lots of things to do and loving every minute of it was there but where the monetary donations come in you know you can even think of it as sponsoring a child who camp this is i mean everything is free and you know like i said all the books we just bring in we put them in the care packages like she sent gift cards would be fabulous but the whole point is that you know they're whatever you're donating to sponsor a child to go to camp and that's gone directly to them there is no you know it just all that money goes directly to the kids which is just i think  kids everywhere and helping them is just such a wonderful thing and another thing till it's by all means if you know someone nancy was at our office yesterday we have an office in pennington thanks to dr ron suzuki and has given us some space she was in the office preparing the five hundred ok ok ok do which is fun to do but someone walked in and said oh my goodness my sister was just diagnosed in virginia how can we get help her children so we don't know how word will spread but if there's a family that we can help whether you know we've had techs come in  families that say ok my child is four but on a different level and he wants to know what's going on how do i do this we're not professionals but we have experience as to what has worked and what we've seen work we have resources that we can provide free of charge to them and say here's a book you know here's a great way to share the b with a less and whether that loss took place a year ago or twenty years ago that's an impact and whether it's a grandchild or a child we want to reach out and say you know we recognize that you were a caregiver and we recognize that you know we just got a call yesterday from a woman who said my twelve year old just can't imagine what pups going through and how do i have a way to talk to him he's share if you do you know of anyone and we may be of help please share hope loves company share videos on you tube we have like five on you tube also i always say this time goes fast when i was there we're having fun because