The Valerie Fund Interview

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Every day you and I get bombarded with negative news. And just like our bodies, become what we eat, our minds become the information that we consume. If you want to stay positive, it’s so important that you also listen to stories that inspire you and uplift you. In this podcast we interview leading experts dedicated to solving the world’s most pressing problems. And if you stick around, I promise you will not only be as informed as if you watched the news, you will be uplifted, inspired, and have more positive energy in your life. Welcome to Great.com Talks With…

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Hi and welcome, today’s great.com talks with Barry Kirshner, who is the executive director of the Valory found org who are New Jersey’s leading kidney cancer charity. And if you haven’t done so already, you definitely want to press subscribe, because today we’re talking about what can be done to help children who are struggling with cancer and blood disorders. Welcome to our podcast.

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Thank you. Thank you for having us at the gallery, but thank you so.

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For someone that might not be so familiar with the challenges, both of kid cancer and also the challenges you are going through as an organization, how would you describe what you do and the challenges that you’re facing, starting with describing what we do?

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I’ll go back a little bit in a very brief history of the Valerie Fund. We started in nineteen seventy six when Edna Sue Goldstein lost their daughter Valerie to her cancer after her battle. And they spent many years taking her from their home in northern New Jersey into New York City to get the treatment that she needed. From that, they realized that there was a lack of available treatment for children and families in this area, so they started this concept in memory of their daughter Valerie, so that no one should have to travel very far for the highest quality of care. They opened the first day, they raised money and they opened the first Valory phone center in nineteen seventy eight. And from their desire to make a difference, there are now seven Valory Fund centers throughout the New York City area, New Jersey and the Philadelphia metropolitan region, whereby any child fighting cancer or a blood disorder can get the highest quality of care close to home at any of these seven different treatment centers. In addition, they saw a way to help children in the summer be with others that are fighting cancer. And they started a camp called Camp Happy Times almost 40 years ago now, so that every summer the Valory Fund also supports close to two hundred children fighting cancer who have, as we say, who have or have had cancer, can come for free to camp happy times during the summer. And our third major program is a scholarship program where this year we awarded ninety three college and vocational school scholarships to ninety three different children from our seven centers and camp that want to continue their education. So we’re here to support the kids. We’re here to support the families. We’re here to make a difference for children fighting cancer and blood disorders.

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As you could imagine with the pandemic as the virus started to rage here in the states in the spring, the realization that cancer doesn’t take a break during a pandemic was very clear to everyone in all of the Valory fun centers. And the need to support these children in these families remains as we all fight this horrible pandemic with the pandemic has also done. Currently, though, Emil, it is brought forward the need that some of these children and their families have as people lose their jobs, as they go, as we all fight this this pandemic.

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So we’ve had to reach out and provide much more emergency funding to the children, to the families. That will be approximately five thousand children that will come through these seven Valory Fund centers every year.

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And for many of them, it’s been a struggle to provide the proper nutrition and and and to pay bills for family members, especially inner city families that don’t have the resources that some other families will have. So we have taken it upon ourselves during this pandemic to provide direct emergency support to these families and these children beyond the millions of dollars of funding to make sure that these centers can operate with social workers, child life specialists, educational liaisons, psychologists and integrative medicine that would not exist in the hospitals without our philanthropy. So it’s been a stretch. It’s been a struggle to support the families directly, in addition to supporting these programs and services that we’ve traditionally supported. But we here for the kids, that that’s not going to change.

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The fundraising is changing and it’s become more difficult, you know, as we fight through the pandemic.

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Hmm.

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The story of Valerie found really shows the impact people driven by passion can have and start to create this kind of movement. And I also understand how deeply challenging it must be in good times as well. But in this kind of pandemic situation, how hard it must be to respond and do the work that you know is so important. I’m really curious to speak with you, actually, because I suspect a lot of our listeners and I included don’t really understand how severe is the problem of children cancer, like how many people are affected? What are the consequences? So I would be really curious to hear a little bit more background on the problem.

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I would thank you. Thank you for giving us the opportunity to share these thoughts. As a first statistic, as a first realization since the pandemic.

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Came to a crisis here in the States in mid-March. Sixty nine Valory Fund New Valory Fund patients were diagnosed with cancer just in the last eight months. And that’s beyond the hundreds that we’re currently going through their treatments, as well as the hundreds, if not thousands of children really that are coming through with other hematological diseases. So when a child comes into a Valory fund center to get their medical treatment, the Valory Fund realized Aansoo recognized decades ago that it’s more than the medicine that really treats the child. There is a whole team of psychosocial clinicians, practitioners that need to be there. There’s a social work team. There are child life specialists.

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There are psychologists that need to be there to handle the psychological crises, to help the families get through the financial pressures or just to understand the treatment protocols and the journey that their child is going to undergo over the next two to two and a half years, in some cases with the acute lymphoblastic leukemia or acute, you know, other acute forms of childhood cancer. The treatments are often not just a month or two or three. They go on for a year or two or three, and then there are follow up treatments. So beyond the amazing medicine that’s being administered by the doctors and nurses, that’s where the Valory Fund is come in and supported the family and the children with this whole team and network of, as I say, social work, child life, educational support so that the the the schools are aware of how much time the child will be out of school and how how to relate it to the the child’s friends at school so they don’t look at you at this child with cancer or sickle cell disease or hemophilia is something that they could catch. There’s a whole line of educating and explaining that needs to be done with the schools and with the children’s network.

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There’s integrative medicine to deal with pain management and acupuncture and things of that nature to relieve the stresses and anxiety. Aroma therapy is often given. These are all ways that the Valory Fund has come into the lives of the children and their families to make this whole process much more manageable, to bring down the anxiety level, to have neuropsychologists and psychologists there. Many of these positions we know here would not exist without the funding that we provide to these seven hospital centers, because so much of the non medical service is supported by philanthropy. And that’s what Aansoo wanted to create many, many years ago. And that’s what we’re most proud of. And that’s what the children are fighting. And then you think of what happens if you have a child that unfortunately is diagnosed with leukemia in May or June or July of this year, you’re fighting all the stresses of the pandemic, trying to keep your family safe, making sure no one catches coronavirus. Perhaps the mother or father of one of the heads of the family has been furloughed from their job because the economy is always impacted during during the pandemic.

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And then you’ve got to deal with a child that was recently diagnosed with leukemia. The stresses on the family are incredible. We want to support all that. And that’s why we’re here. And that’s why we love we love telling this story because we need to raise four and a half to five million dollars a year to fund all of these essential programs that

are needed for psychosocial support for these kids in these families. And we’re proud to do it. And we love telling these stories.

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You really paint a picture that to me was important to understand about what kind of experience it must be to be the parent of a child that is going through this disease with all the things that needs to be learned and how to deal with school. And all of it must be so overwhelming. So I’m really grateful. There is an organization like the Valory found that is there that already has knowledge of what is needed to create a holistic solution to this disease. And I assume then that the founders sue and you and Ed Goldstein Sue and Ed, I assume then that they saw that this holistic picture was missing back in 1976 when the founders when they founded the fund. So from your point of view, then, has his life changed a lot since then? What would be the difference between having this disease now and 40 years ago?

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The main difference now is that families don’t have to travel and Sue had to travel with Valerie from outside New York City through traffic over bridges into New York City, sometimes an hour to an hour and a half, if not longer, with traffic to get her into the hospital, to get her the treatment she needed. And then maybe many, you know, they would spend many hours in the hospital and three or four hours later, after her chemotherapy, they would have to drive home with her in the car when she was having reactions, when she was sick from the after effects of the chemotherapy, that and that was there. That was their initial focus that we can’t. Make it so that families have to go through this travail to get the treatment they need. We need to bring these outpatient treatment centers closer to home so that it’s not disruptive to the family, it’s not disruptive to the sick child’s siblings. So there’s less stay in hospitals. And over the last 40 years through advances in medicine where many of these treatments can be given on an outpatient basis, but also very much due to the the foresight of NSA they were.

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This funding allows these Valory Fund centers to be geographically located in major suburban areas so that families don’t have to drive into New York City or don’t have to drive into Philadelphia and they can get the treatment they need close to home. So it keeps the family intact and it eases the stress. There’s been many, many advances medically that probably would get to the children and get to the families anyway. But now they get these new protocols and these new medicines with much more ease and much more efficiency. The children being treated in the Valerie Fund centers, we used to have to get shots and long involved treatments for their sickle cell disease now find counteracting medicines and remedies with just a pill or to be on a daily regimen at home of things to treat sickle cell disease that they could get in there.

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Valérie fund centers. So it’s a whole it’s a risk. It was recognized by it. And so that it’s not just the child that gets sick, that needs treatment.

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When a child is diagnosed with cancer, it’s the whole family that’s impacted. And that’s what this network of psychosocial team members is there for at the Valory Fund centers. And that’s what we are proud of, to make sure it is there. And we’re also very responsive to the medical directors and the doctors and the nurses in the centers when they say, Barry, you know where we wanted to Valerie fund, this is great, but we need we need to provide more acupuncture and acupressure and other forms of integrated medicine because we find it really relaxes the children and it relaxes the parents just to come in and get something simple, like a foot massage or a back rub, or to have an integrative medicine specialist that knows pressure points in the body, as you said before, that the holistic healing so that it takes all of the stress out of a very wound up, an anxious family member, and everyone leaves in a much better physical and mental state of mind. And we’re proud to make that happen.

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And we recognize when the doctors reach out and say, can the Valory Fund help us provide this or can the Valerie Fund fund this program or can we get these educational books to teach young children how to deal with their sickle cell disease or to deal with their hemophilia?

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We can provide the funding for that, whereas the hospitals are so cash strapped providing medical care, they can’t do it. That’s where we come in and that’s what we’re most proud of.

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Hmm, I can imagine.

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How important that support must feel to the whole family, like you said, it’s not just one child that was getting sick, it’s the whole that tragedy is affecting the whole family. Now, we’re coming up towards the end of this interview. And I can imagine that someone listening to this feels like just the support you give is necessary. I want to either help out somehow or I want to stay updated on the work that you guys are doing. How can someone. Yeah, how can someone stay up to date? And what can someone do to help?

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The best thing, the great question and the best thing anyone can do is find us on our website. We’ve spent a lot of time and a lot of resources to be there so people can see how they can help. And I would suggest anyone who wants to help children at all and especially wants to help children that are that are being treated at a pediatric hematology oncology center should reach out to us very simply at the Valory Fund dog tag Val eroi f unde, Doug, you could sign up to get our newsletters. You could sign up to be on our email list. We’re sending out regular blasts, of course, to tell people how they can help. We have fundraising events all year. They’ve been impacted by the pandemic, of course, and it’s made it harder to generate the funds that we need to support the children and families and the hospital centers. But it’s all there at the Valory Fund. Doug, you can be part of our walks and our runs and our golf fundraising events here. We have a very large dinner gala that this year, of course, has to go virtual on November the 20th.

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That is a large fundraiser. And we have stories of the kids also on the website. I would encourage anyone to to go to our video link and see the videos and the stories and hear from the children and hear from the families that speak about going to the Valory Fund centers and the they speak about the care that they get and feeling like they are part of the Valerie Fund family to see the impact that we could all have. But it all starts and stops on the website. Of course, you can make a donation through the website. We need to have support to send children to our camp. Happy times and almost two thousand dollars it cost us. Per Kamper. We have scholarship programs that can be funded. We have days of care that can be funded. But the short answer is the Valory Fund, Doug, and you’ll hear it all there a lot more succinctly than you’re hearing it here.

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Beautiful. Barry, thank you so much for speaking with great PACOM today.

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It’s our pleasure. And we can’t thank great dotcom enough for giving us this exposure. Thank you so much.

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You’re welcome. And for you listening, if you enjoy this dialogue and you would like to that more people heard this kind of message, please, going to your podcast app or to YouTube and plus subscribe, that will really help our our chances of getting into different top lists and be seen so more people can get inspired and want to make positive change. Thank you so much for listening and we’ll see you in the next episode.

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