Our Delaware Valley Podcast

Children’s genetic disorders and the non-profit Cool Cars for Kids were discussed by Sarah E. Raible, MS, LCGC, a genetic counselor and the clinical director of the Center for Cornelia de Lange Syndrome (CdLS), and rare disease core leader in the Roberts Individualized Medical Genetics Center (IMGC) at Children's Hospital of Philadelphia  and the Chief Operating Officer of Cool Cars for Kids, and Lainey Moseley, an Emmy® award winning journalist working for CBS and NBC News,  founder of CHOPS Syndrome Global; an organization raising awareness for her daughter Leta’s rare disease CHOPS Syndrome, and Cool Cars for Kids Board Member. 

We talked about how ‘rare’ is rare?  One in 11 families are affected by some form of genetic disorder, ranging from clef lip, spina bifida, to heart malformations and other identifiable conditions.  Othe genetic mutations can be so rare that – as in the case of Leta, the exact cause can take decades to discover.  Her disorder was identified by a CHOP test when she was 18, her genetic condition named CHOPS Syndrome in honor of the hospital that discovered it.  Today there are some 40 patients found in Italy, Texas and around the globe, now connected by Lainey’s organization.   

We spoke about the extra roles the parents of these children must take on, caregiver, advocate and researcher.  Lainey is currently in post-production on her documentary RARE, an essay-style documentary in three acts, each delving into the lives of families grappling with rare diseases, the immense challenges they face, and the remarkable scientific progress they drive in the quest for cures. She has also organized their 2nd CHOPS Syndrome symposium in Philadelphia this summer, July 19th and 20th where Unravel Bioscience will be discussing their results for potential FDA repurposed drugs that may be treatment options for their kids.  

Fundraising is vital to these families and to the research that helps identify their conditions.  Cool Cars for Kids was founded by former CHOP geneticist Ian Krantz , Sarah and others to provide help and hope to children with rare genetic diagnoses and their families, and to support research that will identify the best possible treatments and cures. 

Their annual fundraiser, the Seventh Annual Philadelphia Concours d’Elegance kicks off with a Preview Gala on Saturday, June 22, followed by the main event on Sunday, June 23 at the Simeone Foundation Automotive Museum.  Tis year’s featured model is the Jaguar, with special displays and a panel discussion about the vehicle.  There will again be the Cool Car Corral, an outdoor space where anyone can display their ‘cool’ car, classic, rare or just beloved.  Kids activities, music, food trucks and admission to the Simeon racing car collection are part of the day’s fun.   Tickets and corral registration available by visiting philadelphiaconcours.com or coolcarsforkids.org.  Walk-ins and drive-ins are welcome that day.

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Amy Needle, President and a founder of Historic Philadelphia, Inc. discussed the summer and fall activities planned for their 30th Anniversary year.  Historic Philadelphia, the brainchild of former Mayor Ed Rendell, was founded to package and promote the tourism impact of the many historic sites and the pivatol events that happened here.  Today it oversees the Betsy Ross House, the home of Betsy, her many husbands and children and her upholstery business, and the redeveloped and revitalized Franklin Square, one of William Penn’s original green spaces.  It also offers live interactive presentations by costumed reenactors throughout the historic district.  We touched on the plans for this year, and ongoing partnerships with other district museums and sites in anticipation of 2026 celebrations.

Once Upon A Nation, now in its 20th year, will again offer its famous Storytelling Benches in Old City and Valley Forge, with new free programs for kids, ‘Colonial Kids’ Quest’ and ‘Meet the History Makers’ plus a daily ‘Colonial Muster.’ Beginning this fall ‘Building Independence’ will launch at Carpenters’ Hall.  

Franklin Square, celebrates its 18th Birthday with free workshops and kid’s storytime and the daily fountain shows in the Rendell Family Fountain.  The Philadelphia Chinese Lantern Festival, their major fundraiser, returns June 20 through August 18 with cultural offerings and vendors.  Fall and Winter fun begins in November with Street Curling and the free Electrical Spectacle Light Show

At the Betsy Ross House they will celebrate Flag Day with Flag Fest 2024, June 9-15 with a flag raising with Betsy Ross.  For the 4th of July they will host a Children’s Naturalization Ceremony on July 2.  Ongoing programming includes ‘Meet the Women of the 18th Century.’

For a complete schedule of events and tickets to the Chinese Lantern Festival go to historicphiladelphia.org.

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Ann Deschamps, Director of the Mid-Atlantic ADA Center discussed their work in educating and training individuals, businesses and communities about the Americans with Disabilities Act, from who is protected to what employers, governments and businesses must do to accommodate this growing population.  We discussed who is covered by the ACT, a wide range that includes anyone with a physical or mental impairment that substantially limits one or more major life activity, the businesses that are either responsible to accommodate through the ADA or local law, and how the ADA Center can help with information and direction.  The Mid-Atlantic ADA Center is one of ten across the country offering these services.       

Today we discussed the recent rulings from the federal government addressing state and local government access to technology.  This long awaited ruling provides guidelines and requirements for apps and programs that allow access to pubic websites.  Ms Deschamps refers anyone who wants to know more about the requirements and accommodation apps to visit the Department of Justice ADA site at ADA.gov.      

We spoke about the hospitality industry; people with disabilities and their families generate up to 21 Billion in revenue , yet many hotels, restaurants, museums, nature centers and transportation providers don’t know how to accommodate these consumers.  The Mid-Atlantic ADA Center will host a Hospitality Conference October 15-17, 2024 at the Hotel duPont in Wilmington for the industry with speakers, vendors and panels on best practices.  The event will kick off with a day-long excursion to Winterthur, a pioneer in accommodation and inclusion.  

We wrapped with a discussion on on-going concerns, the aging population, the need for healthcare providers to step up accessibility to care, and housing, a constant concern for all persons with disabilities, heightened by aging home-owners who want to stay in their homes.     

Finally, she encourages anyone, from businesses to individuals to community and civic groups to reach out for information and programming to help implement the ADA for an inclusive society.  

For more information about training, the conference, and facts about the ADA visit ADAInfo.org or call 1-800-949-4232. 

Ms Deschamps also recommends the Job Accommodation Network for questions about types of accommodations available to employees, some simple.  Find them at AskJAN.org. 

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Margaux Murphy, Founder and Executive Director, The Sunday Love Project discussed their free grocery store, Greater Goods, which serves the neighborhood of Kensington.  We talked about the image of the community, and the many families and older residents who call it home.   

Sunday Love Project, through grants, donations and volunteers, focuses on these families in Kensington and ensuring they have enough to eat.  Only requiring ID and a bag for the food, area residents are issued ‘chips’ to use as currency to select and ‘buy’ their groceries.   Volunteers accompany them pointing out the best buys and making suggestions for healthy choices.  Children are given a mini-cart to help their family shop.  The store is full service,  also supplying cleaning products, baby needs, toiletries and women’s personal care supplies.   In addition to the grocery store, Sunday Love Project opens its adjacent store Saturdays for community activities, including thrifts and kids programming. 

Donations and volunteer hours are needed, and Margaux asks that any caring, non-judgmental individual go to their website to see how they can get involved. 

Greater Goods is open Monday-Friday, 9am-12pm. No appointment needed. Our only requirements are to bring ID the first time, and to bring a bag for groceries.

For more information go to SundayLove.org

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Priscilla Rakestraw, Deputy Director of Development for the Ministry of Caring described the history of the charity, starting from a homeless women’s shelter to a multi-site organization that supports the homeless and the working poor with through counseling, job training/employment and a job placement, a food pantry, emergency shelters, Rapid Re-Housing, Day Care and Learning Centers, dental services, clothing distribution center, a residential Senior Center, and three dining halls that serve the public with hot meals.  
We discussed the upcoming 41st Annual Emmanuel Dining Room Auction – in Fabulous Las Vegas style! It’s Sunday, April 28 from 2 to 6, at the Chase Center on the Riverfront in Wilmington with games, food, an open bar, music, silent and live auctions with free parking! Tickets to the Las Vegas theme auction – $125 per person, just $75 for those under age 25, get them now at ministryofcaring.org
For more information about services, volunteering or donations, go to ministryofcaring.org.

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From Rebuilding Together Philadelphia Stefanie Seldin, President and CEO, and Jean Allen, Volunteer,  Board Member and recipient of a home rebuild, discussed the non-profit that seeks to repair homes and revitalize communities.  Each year, with the support of hundreds of volunteers and community partners, they provide repairs to at least 125 homeowners, over 2,100 homes since 1988 to make them safe, healthy and secure assets for the next generation.  Volunteers work along side professional builders to make homes safe for their owners, based on a 25-point check list of priorities that includes fixing exterior walls and rooves, removing mold and pests, kitchens, baths and laundry are vented, smoke and CO detectors are installed, carpeting removed and replaced with dust free flooring, fixing plumbing and heating, and installing grab bars where needed.   

We discussed Philadelphia’s housing, older homes, an older population, with a 25% poverty rate and 51% home ownership, many with title issues.  Stefanie explained there are over 27,000 homes without the basics of heat or running water and 25% of our children have asthma, affecting their health, their education and their parents ability to work. 

Jean described the process, once homes are chosen through partnership with participating community development agencies, the hired contractors work with the homeowner to review the work, then volunteers and neighbors work together with them to complete the jobs.  The results, a liveable, safe home that not only increases the home’s value but impacts the neighborhood with lower crime rates and a new sense of community.

RTP believes that housing is a human right fundamental to survival, and homeownership gives a family the financial security of building equity (rather than paying rent) as well as the security of having a place to call your own.  It offers a stable environment to raise a family, a sense of pride, and a stake in the community. 

Stefanie and Jean discussed the need for volunteers, individuals and groups or businesses to work at their three annual Block Builds or the Asthma Trigger Reduction program rebuilding days.  They also need participants and volunteers for their Saturday, May 8th annual 5k Run/2-mile Walk to help raise money for the home repairs that keep people safe in their homes.

For more information about programming and volunteer opportunities go to RebuildingPhilly.org

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Stephanie Gambone, President and CEO of Junior Achievement of Southeastern PA discussed the national organization that readies young people to be future-ready for economic mobility and the pursuit of their own ambitions.   With a focus on under-resourced communities, JA works within schools with students as young as five, through middle and high school, to provide access to high quality financial education and career-readiness learning experiences to inspire possibilities, prepare them for careers, and build skills to succeed.   Programming has expanded through a US Department of Labor ‘Workforce Pathways for Youth Demonstration Grant’ to support young people through the age 25 to help them build connections through internships and mentoring. 

She spoke of the need for volunteers, individuals to work with the school programs, and local workforce partners, community organizations, and other nonprofits to offer job internships, business skills and networking.

For more information on enrolling your student or bringing JA to your school, or to volunteer, visit southeasternpa.JA.org

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Surrey Senior Services President and CEO, Jill Whitcomb discussed the non-profit that provides aging-in-place services to help older adults in Chester, Delaware and Montgomery Counties navigate and thrive in each of the transitional phases of older life.  Founded in 1981 by Jeanne LaRouche on a “neighbor-helping-neighbor” Surrey’s mission was to help seniors who needed services and to engage retired seniors in need of a new sense of purpose. T oday Surrey operates centers in Devon, Bryn Mawr, Broomall and Media. Each of Surrey’s centers offers a range of exercise classes, health screenings, dental work, activities, congregate meals and social events.

We discussed the special needs of seniors living in suburban communities, home maintenance is more expensive, food and social activities are not withing walking distance and public transportation is expensive and infrequent.  Poverty is another problem, many older residents live on fixed incomes and housing and food insecurity are real, but hidden, issues. 

Surrey delivers and coordinates critically needed services like transportation; healthy lunches and home-delivered meals; center- based and virtual programs and activities; friendly phone calls and CHORE Services–Surrey’s Volunteer Network (yardwork and small home repairs). These services enable older adults to remain in their homes and age well and safely in place. When additional support is needed, Surrey is ready to help with RN Care Management; Medical Procedure Escort Services; Telehealth Services; Personal Finance Management; Live-in Care; Personal Care Services; and Social Companions.

She described the Surrey operations led by nurses, social workers, experienced staff in the field of aging services, and a loyal volunteer corps, many of whom are older themselves.  

Jill explains that Surrey is primarily supported through private donations, grants, volunteers, community partners, and a small percentage of government funding, so community support is needed.  They host two fundraising events each year, their annual Garden Party, this year celebrating Paris on June 12, and an annual Holiday House Tour and gift bazaar in December.    Tickets for the June 12th party will be available – while they last – on their website.

For services, volunteer opportunities and information about the annual garden Party, visit SurreyServices.org.   

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Robb Reichard, Executive Director AIDS Fund Philly and Ronald G. Collman, MD, Director of the Penn Center for AIDS Research discussed the latest news for Philadelphia on HIV. 

There are just over 20,000 people living with HIV in Philadelphia, 10,000 in the surrounding area, up to a third of which are not in treatment.  Many do not know they are infected.   They discussed Philadelphia’s current rate of just over one new transmission each day, well above rates for other major cities.  They attributed it to the city’s high poverty rate, drug use and access to healthcare.  We spoke of numbers, women make up 28% of these numbers, people of color 75%. They noted that Black or brown people face a an infection rate that is 75% higher than their white counterparts, and one in three of these infections will come from sexual contact.

Dr. Collman talked about PREP, now available by monthly injection, PREP can prevent infection;  new treatments can reduce the HIV to undetectable which means non-transferable.  They spoke of the need to get more people willing to seek out PREP and to know their status.  He described his work in research, finding new social paths for better treatment within vulnerable communities, and ultimately, a cure for HIV.  He invites people interested in research studies, treatment options or other information to visit his website by searching for PENN CFAR.    

Robb talked about his work with AIDS Fund, raising private dollars to fund small grants directly to clients of local non-profits to help them stay in treatment.  Averaging just $440 each, they go for rent, appliance repairs, transportation, anything that could impact a person’s ability to stay on their medical plan.  

We talked about fundraising efforts, including the October 20th AIDS Walk Philly, the monthly Gay BINGO, and their annual ‘Formal, Festive or Fabulous’ gala, Black-tie Gay BINGO April 6 at the Loews Philadelphia Hotel.  Featuring dinner, dancing, auctions, six rounds of BINGO and Drag Queen performances, it’s one of the biggest social events of the year.  Dr. Collman will be honored this year with the Fierce and Fabulous Award for his ongoing volunteer work and his commitment to AIDS Walk Philly.         

For more information, or to get tickets for Black Tie Gay BINGO, go to  AidsFundPhilly.org

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The first week of March is National Consumers Protection Week and Philadelphia Division Postal Inspector George Clark of the US Postal Service returned to discuss the many ways we can be duped out of our money.  We discussed this year’s theme, Investment Fraud and the signs that you are being fleeced. Inspector Clark reminds us that if a real estate or business start-up deal is guaranteed, there are investment companies who would be funding the project, not grassroot investors attending a free breakfast or dinner.   He talked about another current scam, a fake notification that you are under investigation and that you must either fund the investigation to clear your name or pay a fine to stop further prosecution.  He wants us to always remember investigations are not revealed to a suspect until they are ready to be charged – ‘When we’re ready we’ll knock on your door,’ and that no agency would ever ask a private citizen to pay for it.  He gave us ‘red flags’ to watch for, including rushing you. Demanding a payment immediately and offering payment methods that are not cancelable such as bit-coin, grocery-story debit cards and gift cards.  He also asks us to pay attention to poor English or grammatical errors that suggest you are not dealing with a native English speaker.  Discussing recourses for after fraud he’s tells us, once the money has gone overseas, it virtually impossible to get it back.    

He also touched on romance and lottery schemes, and ‘work from home’ offers that are actually money laundering plots.  He offered tips on safe-guarding your bank account when offered a deal or opportunity too good to be true.   His advice, wait before sending money or buying gift cards to forward, a real deal can wait.  He also recommends that any offer or request be discussed with a trusted friend or family member. 

For more information - or to report a fraud - visit USPS.com

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