Our Delaware Valley Podcast

Darren Sudman, co-founder and CEO of Simon’s Heart, discussed the non-profit’s work in discovering hidden heart conditions and preventing deaths from Sudden Cardiac Arrest in children.  He related the story of son, Simon, who died at three months.  Unlike most cases of Sudden Infant Death Syndrome, the Sudmans learned what took their child’s life - a genetic condition, Long QT.  Long QT syndrome  is a heart rhythm condition that can cause chaotic heartbeats that could trigger a sudden fainting spell or seizure. In some cases, it causes sudden death.  They also discovered that Simon’s mother had the same condition.  They learned that apparently healthy children can have the condition, and that it’s only when a youth athlete dies on the court or playing field that it’s discovered.  The Sudmans formed Simon’s Heart to raise awareness of the symptoms and to advocate for heart screenings for young athletes.  Simon’s Heart works with school districts to offer free CKGs and other tests to kids before they participate in sports.  He explained that it takes a district of 2-3,000 students to organize a clinic as only 10% of parents take advantage of the offer.

Mr. Sudman noted that many deaths, including drownings or single car accident deaths, could be undiagnosed cardiac incidents and he calls for better reporting to help researchers and to help survivors check other family members for a hidden defect.  He urges everyone to learn CPR, but notes you don’t need a certificate to save a life, rudimentary chest compressions can keep someone alive until real help arrives.  Toward this Sion’s Heart has created a ‘jukebox’ of 100 beat per minute songs to help with emergency CPR.   They also have instructions to help communities, churches or groups crowd fund raise for AEDs which can be installed in a gym, rec center or school for as little as $900.   

To learn more about Simons Heart go to simonsheart.org.

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Autism Advocate and Author Erin Clemens, and Dr. Todd Harris, Executive Director of Autism Services at Devereux Advanced Behavioral Health discussed growing up with Autism Spectrum Disorder, what to expect and how to prepare for a life after education.   Dr. Harris continued a conversation begun in his last appearance, are we spending too much time concentrating on a diploma at the expense of preparing the youth with ASD for independence with a job and a social life?   Erin, who writes and blogs as AspergerSadie, is recent college graduate; she lives independently, drives and holds a job at Devereux, thanks to aid from an assigned service provider who makes sure she stays on schedule and focused.  She talked about her school experience where her autism was not diagnosed until fifth grade and where no real accommodations were made, she noted that she lost critical support through a lack of information – she did not know that by deferring her high school graduation she could receive services through her 21st birthday.  Dr. Harris discussed the need for parents to register for services well before graduation and to plan ahead for the time when their child is no longer in the school system.  He also discussed social opportunities and his recent discovery that integration into society and friendships were more important to his clients than employment and career.  

Erin’s book, I Have Asperger’s, is available through Amazon, you can follow her on Twitter and Facebook as AspergerSadie

For information about services offered by Devereux go to devereux.org

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Linda Torelli, Marketing Director of the Brandywine Valley SPCA discussed the no-kill shelter, which places dogs and cats in new loving homes.  She spoke on how animals fall into their care, through abandonment or simply by getting lost.  We talked about surrender, how they work with families to help keep an animal at home through a pet food and supplies pantry, through training and through their low cost Vet Clinic, but also how they help with the surrender when an owner can no longer care for a beloved pet.  We also touched on Trap/Neuter/Return programs for feral cats.   Ms Torelli spoke about the volunteers who keep them operating, through taking the animals, exercising them, and acting as foster homes for young or sick pets.  We wrapped with information about the big Mega Adoption event at the Bob Carpenter Center in Delaware where hundreds of adoptable pets will be available and ready leave with their new parents.  She gave us tips on how to pick a new family member, how to introduce existing pets to the new one and how to prepare the home and family for the addition.

For more information on adopting, volunteering, making a donation of money or items, or for info on the low cost Vet Clinic for spay/neuter and vaccinations, go to BVSPCA.org

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National Constitution Center Manager of Exhibition Development, Sarah Winski, and Exhibition Developer Elena Popchock discussed the museum’s new permanent exhibition, Civil War and Reconstruction: The Battle for Freedom and Equality which explores the ‘Second Founding’ and the writing, passage and impact of the Reconstruction Amendments.  In this first exhibition in the country to address the Constitutional battles over slavery that led to the Civil War and how the Constitution was changed to reflect the ideal of the Declaration of Independence, original drafts and documents, interactive displays and historic objects tell the story of the period before the war and of the Reconstruction years.  Ms Winski described how they approached the exhibit to explain the passage of the 13th, 14th and 15th Amendments and their immediate effect – African Americans not just voting, but voting in strong numbers and achieving elected offices across the states.  She noted that the effect was especially felt in the North, where they may have been free, but they were barred from voting.  They spoke about the gradual whittling of the rights granted through poll taxes and other ways to impede voting, the rise of Jim Crow laws and the formation of the Ku Klux Klan when Reconstruction ended.

They told us how to get the most from the Museum and all of its exhibits, through education guides for teachers and parents to Town Hall lectures and discussions.

For more information about visiting the National Constitution Center go to constitutioncenter.org.

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Tony Heyl, Director of Communication for the ALS Associaition of Philadelphia ,and Marcia Telthorster, chairperson of The Ride To Defeat ALS were in the studio to discuss 2019's Ride To Defeat ALS on Saturday, June 15th. More information at their website. They also spoke about support groups, research and how they are moving forward as an organization to defeat ALS. Thank you for listening. Markus

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Dr. Ian Krantz, M.D., a pediatrician and geneticist at The Children’s Hospital of Philadelphia (CHOP) and the Perelman School of Medicine at The University of Pennyslvania, and Sarah Raible is a Genetic Counselor and Clinical Director, Center for Cornelia de Lange Syndrome & Related Diagnoses, and Senior Genetic Counselor, Division of Human Genetics at CHOP, discussed their work and the upcoming Philadelphia Concours d’Elegance benefit.  Tickets are available at the door and online now at  www.coolcarsforkids.org

They discussed genetic diagnosis, research and treatment at CHOP, the leading hospital for genetic issues, drawing families and patients from across the globe.   

Developmental disorders are the leading cause of infant mortality and childhood disability and 7% of children born in the U.S. have cognitive disability and/or structural birth defect.  Conditions include visible or detectable issues such as Down Syndrome  and heart defects.  Over 400 babies are born each day in the U.S. with a congenital anomaly – and many families know before birth and seek treatment.  Other conditions do not present until a child fails to reach a milestone in development.   They described the programs and services offered and stressed the need for funding their vital research.

They spoke about Cool Cars for Kids, a non-profit they organized with legendary collector Mike Tillson, one of the country’s most highly regarded authorities on classic and sports automobiles, who founded Tillson Motorcars over 35 years ago.  Mike Tillson founded the Radnor Hunt Concours d’Elegance, a model for the Philadelphia Concours d’Elegance.  Supported by local high end car dealers, the event, June 14th and 15th at the Simeone Automotive Museum, will celebrate Bentley on its 100th Anniversary, as well as other rare vehicles.  In addition to the ‘Concourse’ selection, car enthusiastic may show their ‘cool’ car, cars that are rare, modified or just loved in the Corral.  Friday, June 14th will be the Gala sneak preview with Coach Dick Vermeil, whose granddaughter was treated at CHOP, attending and signing bottles of his wines.   Te following day will be the general admission family friendly Concourse and Corral. There will be kids activities throughout the day and refreshments.  

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Kevin Kelly, Executive Director of the American Diabetes Association of Southern Pennsylvania and Delaware, discussed diabetes, its forms and its ramifications to all of us.  We began with a description of diabetes; Type 2, formerly called Juvenile Diabetes, which usually presents early in life and is the result of the body's inability to produce insulin, and Type 2 which occurs when the body can no longer use the hormone, usually triggered by obesity, stress and lack of exercise.   Mr. Kelly extended the types to include Gestational which usually disappears after delivery and Pre-Diabetes.   While some cases are caused by genetics, and ethnic influences, many are the result of a poor lifestyle.  He described his own journey with the disease, his ignoring his doctor's warnings that he was headed toward the disease until he was actually diagnosed, and his efforts today to eat a healthy diet, exercise and lose weight.  He discussed the ramifications of the disease, its impact o the body leading to cardiovascular disease, neuropathy, renal disease, eye disease and more.   Diabetes causes more deaths each year than breast cancer and AIDs combines, and having it nearly doubles your chances of heart attack. We also talked about its impact on society, in PA diabetes costs us almost 13 billion each year in medical care, other services and lost wages, in DE the number is almost 100 million.  There is also a disparity in its effects on the poor who have less access to healthy food choices or recreational activity.   He noted that - if we don't change our ways - by 2050 one half of us will be diagnosed and living with diabetes.    He recommended that everyone go to their website to take the Risk Test.  We talked about the American Diabetes Association's mission, to prevent or find a cure, improve the lives of people with diabetes, and to educate all, including the medical trade and caregivers on the disease.  They also advocate, working with - and informing - the state and federal legislators on diabetes, on costs, job security, health care and insurance.  We noted that living with diabetes puts the onus on the patient to maintain and police their own health and Mr. Kelly explained that their mission will always include the people with diabetes, they offer an online FoodHub with healthy diet information, a hotline, and self-management and support programs.   For kids, each year they offer a camp in Delaware to allow kids to kids, surrounded by others who share their diabetes.   Finally, a discussion on  how we can get involved, through volunteering or by participating in events such as the November 2 Step Out Walk to Stop Diabetes and the upcoming June 15th Tour de Cure, a bike and walk/run starting in Doylestown.  Bikers can choose 3, 12, 35 or 63 mile routes, walkers and runners go 5k and there will be a festival for all following the course.

For more information, to take the Risk Test or to volunteer or sign up for the Tour de Cure, go to DIABETES.ORG.

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David Skutnik, Regional Director of Communications for the American Red Cross of Eastern Pennsylvania, and Sophie Kluthe, Regional Communications Manager, spoke about ARC campaigns and programs, including their blood collections, emergency and disaster relief and training courses. He talked about the region served, one of the largest in the country, and the various needs – the shore versus the Poconos, inner cities and rural areas, communities facing hurricanes and areas near chemical plants and railroad lines.  They noted that disaster could strike anyone, through a storm, a chemical release or a house fire and preparation saves lives.  He spoke about Sound the Alarm, a campaign putting free ten-year lithium battery smoke detectors in homes, the pillow case project  for children helping them plan for emergency evacuation and their many hand outs and tip sheets on sheltering in place.  He recommended that every family create a plan for escape and for meeting up in a safe location and practicing it several times a year, especially for children whose abilities and maturity level changes fast.  Ms Kluthe pointed out that they respond to over 62,000 fires each year, and that the American Red Cross is there for the victims, with emergency shelter, food, and even counseling after a disaster, with the nation’s only emergency residential shelter.  Mr. Skutnik talked about Red Cross services to emergency responders and to our military when there’s a problem at home.  We discussed the ongoing need for blood donations and he described their collection facilities, their local drives and their incentives.  Finally, a look at the Red Cross training programs including lifeguard, baby sitter and CPR classes.

For more information go to redcross.org/easternpa

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Felicia Nurmser, Managing Director of Employer Services, discussed how the National Organization on Disability works with employers, schools and workers to keep the disabled on the job and part of a growing workforce.  We discussed who can be considered 'disabled,' a wide list of seen and hidden issues that affect how a person accomplishes their personal, social and professional goals, including diseases such as cancer or diabetes, mental health conditions or the effects of aging, hearing or vision loss or arthritis.  She noted that anybody can become disabled by stroke, accident or illness, at any age, and that identifying oneself as 'disabled' and asking for accommodations is up to the individual and touched on the protections in place for these workers.   She spoke about the large disabled population, people who not only represent great buying power and wish to see representation in businesses, but those who want to work but are not getting hired.  We touched on income disparity, disabled people dependent on services but limited by how much income they can make, others trapped in low paying positions or making less than minimum wage through workshops exempt from paying the minimum.  She discussed NOD's work with young people entering college and preparing them for the workforce and their work with businesses, showing them that hiring the disabled gives them a vast talent pool or untapped talent, workers who are more reliable than the 'able bodied' and cost far less to accommodate than they think.    For more information visit NOD.org

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Nick Liermann, Founder and CEO of Team Foster was in the studio to discuss Team Foster and how they work closely with our Veterans who need help. They provide service dogs for Vets w/ PTSD and other health issues. The Ruff Ride is a fundraiser to help raise money to train puppies to become full service dogs. Get more information about Ruff Ride and Team Foster here.Thank you for listening

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