Our Delaware Valley Podcast Our Delaware Valley

Dr. Ronald Collman, Director of the Penn Center for AIDS Research at the University of Pennsylvania, and Dr. Florence Momplaisir, Assistant Professor in the Division of Infectious Diseases and the Vice Chief for Diversity, Equity, and Inclusion, the Perelman School of Medicine at UPenn, discussed Philadelphia’s rank as a national top 50 ‘hot spot’ by the CDC for new HIV transmissions and their concerns for the city if Syringe Exchange Services are stopped.  

After discussing the biology of HIV we looked at the numbers for our city, 20,000 persons with HIV in Philadelphia, 30,000 in region with almost 400 new infections per year.  While two-thirds of the people living with HIV are on treatment and suppressed, a third are not and are able to transmit the virus.  In Philadelphia 28% of the persons with HIV are women, one of the highest percentages in the country.  The primary transmission method is sex, however intravenous drug use is another cause, one that can soon explode with new city restrictions on needle exchange programming.  Treatments for HIV are great, but not as great as staying HIV negative: even with therapy, people with HIV are more likely to get the conditions of ageing including heart attacks, cancers, dementia and kidney failure.   Prevention is vital, if treated a person can reach U=U status, undetectable means un-transmittable.  PrEP, either daily oral or by scheduled injection, prevents infection, and there is even a ‘morning after’ medication that can prevent the disease even through contaminated needle transmission. 

Breaking down the numbers 64% of PWH are Black and 16% Hispanic.  The rates are 7x higher in Black & Hispanic and a Black male having sex with males faces a 1:3 lifetime risk for infection.  We discussed the underuse of treatment and PrEP in ethnic and minority communities, a combination of lack of knowledge and lack of access.  Youth numbers are also increasing, through carelessness and a mistaken belief that it is not a concern any more or that their circles are not affected.

The two made their case for continued Syringe Exchange Services noting that when introduced to Philadelphia in the 90’s, it reduced HIV transmission by 95%.  They pointed out that epidemics don’t stay contained, and will penetrate the broader Philadelphia community, in particular women who will have acquired it through sexual contact.   They note that defunding clean syringes won’t stop people from injecting, and syringe exchange is a major way that IDUs end up linked to rehab care successfully.   

They also argued that saving $700,000 spent on needles will be more than offset by the cost for HIV and Hepatitis C care, as well as the cost of wound infections which is a huge burden on the City’s health care system and a big user of ER services, which makes it harder for others to access ER services.  

For more information about PrEp and other HIV services, contact the Philadelphia Department of Health at PhillyKeepOnLoving.com

Joe Brooks, Executive Director of the Veterans Multi-Service Center, discussed their FREE comprehensive services for all veterans.   

Founded by veterans, today it addresses homelessness, hunger, incarceration, mental illness, drug abuse and unemployment, from housing and emergency relief, to VA benefit, lost documentation, job placement, to drug and alcohol counseling to military burials and survivor benefits at locations throughout PA, Southern NJ, and DE.   

No initial appointments are required, their headquarters at the corner of 4th and Florist by the entrance of the Ben Franklin Bridge is open Monday – Friday 8:30AM to 4:30PM.  

They ask vets to bring their DD-214 or VA Medical card for verification of military service.  If a vet does not have one or has lost it, the VMC can help them obtain one, the first step to restoring or uncovering benefits.  They will also work on behalf of a vet to correct a discharge status to obtain benefits.   Joe noted that the VMC uncovered over 15 million in unclaimed benefits last year alone. 

While the majority of vets served are male, in 2014 the VMC created the Women Veterans Program (WVP) to address the growing and unique needs of Women Veterans. It offers comprehensive resources for Women Veterans and their families in a trauma-informed space, tailored to the unique needs of military women. The WVP Old City location features a clothing closet, open computer lab, lending library, children’s play area and a full calendar of wellness and fellowship events. All activities, resources and events are free for military women and their children.

On June 21st, Beasley Media Group station WMGK 102.9FM will host its annual Vets Radiothon to benefit the Vets Multi-Service Center. The all day broadcast will feature special guests, hourly incentives, auction items and  prizes as they raise money for this center so vital for area vets.  Learn more at wmgk.com.

To learn more about The Veterans Multi-Service Center, their services, volunteer opportunities and how you can donate in kind, visit VMCenter.org

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.

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.

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. 

Follow the ADA on social media at      Facebookfacebook.com/adanetwork      LinkedInlinkedin.com/company/ada-national-network/      X (formerly Twitter)x.com/ADANational

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