Our Delaware Valley Podcast

From Autism Delaware, Kris Grant, Development Manager, McKenzie ‘Kenzie’ Walsh, Marketing and Communications Manager, and Susan Campbell, Community Engagement Specialist, discussed the statewide programming offered by Autism Delaware. With one in 36 kids receiving an Autism diagnosis, families need whole-life, holistic support and Autism Delaware offers help with education, jobs and social opportunities. They discussed their beginnings as a grassroots family group looking for support and ideas for navigating the systems with a child with autism. Today they offer programming statewide with multiple opportunities for families to socialize and support each other.  They schedule bowling and skating events, as well as holiday parties for the clients and families.

They talked about the job programming and the value of their clients on the job, they are looking for employers who need a reliable, dedicated employee. They also noted they need a lot of volunteers to run their events and there are opportunities across the state to get involved.

We discussed the 2023 Walk for Autism, this year April 13th at Fort DuPont in Delaware City and April 20 at Hudson Fields in Sussex County.     There are two start times at each to allow for casual walking and spacing, and teams and individuals can repeat the loops to raise more money. It’s family friendly and offers space for kids who need quiet time.

Autism Delaware's services are free, thanks in part to the walks.   Walk-ups are welcome, but there are t-shirts and other incentives to pre-register. To register go to AutismDelaware.ORG 

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Matt Radar, President of the Pennsylvania Horticultural Society discussed the 195th Philadelphia Flower Show, the nation’s first and the world’s largest indoor flower exhibition March 2 through March 10 at the Pennsylvania Convention Center.  We discussed the impact of the show which is expected to pump 60 million dollars into the local economy through hotels, restaurants, transportation and other local attractions, it also serves as an inducement for international travel to the Philadelphia region.

This year’s theme is United By Flowers and he described the installations that will be presented, new designers, the largest water feature ever on display, and more international participants. 

We talked about the programming this event supports; this is the biggest fundraiser of the year for PHS.  Matt talked about the community gardens that supply fresh produce, Tree Tenders that plants trees that lower neighborhood temperatures and provide shade, and their vacant lot rescues that actually lowers crime numbers and adds to home values.   It also funds programming that maintains the city parks and boulevard plantings and underwrites their Work Force Development that teaches low income and the formerly incarcerated participants horticultural and job skills. He notes they have a 90% job placement record for its graduates. 

We discussed volunteers, over 3,000 are used to produce the show, plus all year they need tree tenders and gardeners to plant, clear and maintain public plantings. 

Matt invites everyone to come and enjoy the show, there is something for everybody, from interior and patio décor, flowers, bulbs, furnishings and floral art, with class and demos for large projects and window boxes, plus special events such as Member’s Day and the Preview Gala March 1st, family Frolic day on March 3rd, Fido Friday March 8th and the Flowers  After Hours dance party March 9th.   He encouraged us to become members to enjoy discounts and the member’s lounge at the show and special programming throughout the year. 

For more information about membership, programming and The Philadelphia Flower Show go to PHSonline.org

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In part 2 of my new series, Breast Cancer 101, Monica Fawzy Bryant, Esq. Chief Operating Officer and Co-Founder of Triage Cancer and Triage Health discusses the financial perils of a cancer or other life-threatening illness. 

Triage Cancer is a national, nonprofit organization that provides free education on the legal and practical issues that may impact individuals diagnosed with cancer and their caregivers, through events, materials, and resources.  

Because these all apply to everyone, Triage Health, was established to encourage anybody looking for financial, estate and insurance planning to visit the site for information.  

We talked about the parts of a diagnosis that doesn’t come up in the doctor’s office, employment, insurance coverage and personal finances; all can impact your care.  

Just as you are advised to gather all of your medical information about treatment, doctors and hospitals, you should also collect your insurance policies, job leave policies and income sources.  Make sure that your treatment plan is covered by your insurance, look beyond your doctor and hospital, also consider labs, imaging, infusion sites and other providers.  Are they covered?   

She discussed job protections, noting many want or need to continue working during treatment.  Disclosing a diagnosis is a personal decision, but there are job protections in the Affordable Care Act and the Americans with Disabilities Act for employees at larger companies or at government jobs.     
 
Ms Bryant also encourages everyone – from age 18 on – to have an estate plan.  It’s a fact of life, she notes, we all will eventually pass.  Having a plan for your healthcare decisions and your estate should be a priority for us all.  Triage offers worksheets and forms for all fifty states to help with the process.  

While planning ahead for a life-threatening or chronic disease is difficult, she advises us to consider total costs when choosing insurance, instead of choosing only by the monthly cost, look for the lowest yearly cost by adding the monthly premiums and the maximum out-of-pocket cost.  While the ACA is not comprehensive, it does prevent you from being denied coverage based on pre-existing conditions so you can shop around at enrollment time.

Triage Cancer’s free educational materials can help you navigate legal and practical issues that arise after a cancer diagnosis like health insurance, finances, disability insurance, work and cancer, estate planning, and more.   Services are free to the public and offered in short videos, checklists and webinars.   

Learn more at TriageCancer.org and TriageHealth.org

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Maura McCarthy, Chief Executive Officer, and Tara Rasheed, Senior Director of Capital Projects, discussed the latest at the Fairmount Park Conservancy with the grand re-lighting of the icon Boathouse Row, and a new Welcome Center opening at FDR Park.  The Conservancy works with the city to administer the city’s more than 2,000 acres of public green space.  They also reviewed the past year, with new trails and the dedication of the Anna C. Verna Playground.  We talked about the wide variety of recreational opportunities within the park system, hiking, trail-biking, walking trails and family playgrounds.  They noted that the parks not only add to the general health of the residents, they improve our air quality, help with climate control and add to our property values.  We also discussed the wildlife habitat created by the parks, especially FDR with its wetlands and lake. 

Maura noted that Philadelphians support their park better than any other major city, we are the envy of the East Coast, with plenty of ways to get involved.  The neighborhood associations surrounding the more than 130 local parks have Park Friends groups to help maintain their greenspace. The Friends of Fairmount Park join in city-wide initiatives including the spring and fall Love Your Park clean-ups, scavenger hunts and their upcoming leadership training program to educate and engage local leaders to become skilled advocates for their parks. 

Tara discussed more development plans for FDR Park, including restoring the old stable buildings into a café and gathering place, she tells us that the Conservancy is dedicated to repurposing, adapting and reusing historic hardscapes and structures. 

For maps, event calendars, membership and more about the Fairmount Park Conservancy, visit MyPhilyPark.org

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Romy Braunstein, a Rare Disease patient, advocate and a founder of GettingUp.org discusses the over 10,000 rare diseases that impact over 35 million worldwide.    A ‘rare’ disease affects fewer than 1 in 2,000 people, they can be genetic or develop later in life for an unknown reason, although trauma can trigger symptoms.   Romy encourages everyone to pay attention to the adult-onset symptoms such as blurred vision, muscle weakness and unexplained falls -  all could be a warning sign of an autoimmune or other disease.  She explained these fairly common symptoms often overlap, so initial misdiagnosis is common.   In addition, symptoms differ not only from disease to disease, but also from patient-to-patient suffering from the same disease so getting an accurate diagnosis can take up to eight years.

Romy notes that symptoms come and go so patients need to be vigilant and advocates for themselves, keeping track of symptoms, and asking for testing.  She warns us about ‘medical gaslighting’ – symptoms being dismissed or given being passed off as part of aging or even psychological.

Rare Disease Day is February 29 in 2024.  This global movement works for awareness, healthcare, and access to diagnosis and therapies for people living with a rare disease.

Learn more at GettingUp.org or RareDiseaseDay.org

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Dr. Ashley Jordan, President and CEO of the African American Museum of Philadelphia discussed the museum and its programming.  Founded by Charles Wesley in 1976, the African American Museum of Philadelphia is the first city-funded cultural museum in the country.  Through select items, recreations and art the museum shares first-person accounts of what life was like in Philadelphia, a story that is not the same as other cities, it’s an urban story with racial strife but also free men and women working and living here.  She emphasizes that their presentation speaks to people, humanizing history with themes of love, family, that all can relate to.  Rotating exhibitions are presented throughout the year with Audacious Freedom: African Americans in Philadelphia 1776-1876 a permanent installation. It features a 100-year timeline of the events and people who shaped the city.

Programming includes guides for teachers, workshops and special events centered on Black History Month, Juneteenth, Women’s History Month, Poetry Month and more.    

We ended with the news that the museum will be moving to a new location off the Parkway in 2028, adjacent to the Free Library of Philadelphia.  

The museum is open Wednesday through Sunday from 9:30A to 5:30P, timed tickets and walk-ins are welcome. 

Learn more at AAMPMuseum.org

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Chase Trimmer, Senior Development Director, Philadelphia Region for Special Olympics Pennsylvania and Nick McIllwaine, from Beasley’s WMMR Preston & Steve Show and Captain of Team WMMR, discussed the mission of Special Olympics and the upcoming Polar Plunge, February 10 at Citizens Bank Park.  The mission of Special Olympics PA is to provide year-round sports training and competition in a variety of Olympic-type sports for children and adults with intellectual disabilities, giving them continuing opportunities to develop physical fitness, demonstrate courage, experience joy, and participate in a sharing of gifts, skills, and friendship with their families, other Special Olympics athletes, and the community.  All training and competition opportunities are provided free of charge to the athletes and their families, enabling everyone to experience the benefits of Special Olympics that extend well beyond the playing field.

They’re freezin’ for a reason!  Help celebrate over 50 years of Special Olympics at the Polar Plunge on Saturday, February 10th.   There will be games and a DJ and pools set up for your dip.  General Registration is $50 and all registrants will receive the Philadelphia Plunge T-Shirt.  Walk-ups are welcome but you can join Beasley Media Group and plunge with Nick and Team WMMR!

Learn more about the programming, sponsorships and volunteer opportunities at specialolympicspa.org

To join the Plunge go to phillyplunge.org or visit WMMR.com

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Kerry Sautner, President & CEO of Eastern State Penitentiary Historic Site discusses her vision for the property.  As the second director in the museum’s 30-year history, she has inherited a national institution that has been saved from the wrecking ball and established as a destination site for visitors across the globe and a leading facilitator for discussion on criminal justice..   

Kerry outlined the priorities, expanding its national education leadership and workforce development programming, and creating a reimagined visitor experience.

She discussed Eastern State as a national leader in criminal justice education, speaking to the evolution of the prison system, using personal stories from the incarcerated and victims of crime, as well as bringing leading organizations and experts together to discuss critical issues in justice education and reform.  

Kerry described the new Justice 101 series by the Center for Justice Education at Eastern State.  Each virtual program examines the history of the justice system in America, from its founding to today, and the impact it has on society, citizens, and the world.

Once a month, Eastern State staff invite special guests to foster dialogue about a different topic in criminal justice. Justice 101 programs are free, take place virtually via Zoom, and last 45 minutes: a 30-minute program followed by a 15-minute Q&A. Guests can tune in live, or watch the programs back anytime on YouTube.

Justice 101 Programs:

• January 19, 12:00 pm ET - Conversation on Civil Rights Movements within Prisons
• February 22, 2:00 pm ET - Does the First Amendment Apply in Prisons?
• March 18, 11:00 am ET - Women Behind Bars: Navigating Mass Incarceration
• April 17, 6:30 pm ET - Exploring the 13th Amendment and the Persistence of Forced Labor in Prisons
• May 13, 1:00 pm ET - Policing in America: Navigating the 4th Amendment, Stop and Frisk, and Civil Rights

Justice 101 is designed for learners of all ages.

We talked about their ongoing Workforce Development programming, the historic site offers a pathway to economic mobility for returning citizens, starting with the Preservation Trades Center, which provides training and connections to sustainable-wage paying union jobs in masonry and carpentry.  We also discussed the Lived Experience Activating Dialogue (LEAD) Fellowship supports people coming home from prison to career opportunities in the museum field.

Finally, a conversation on the Visitor Experience Reimagined: We will provide ways for Eastern State’s visitors to engage with the space, incorporating art installations, theater and film; providing educational experiences that encourage and support the different methods of learning; and creating informative and entertaining events that entice people of all ages to visit and engage with Eastern State and the team.   She is also looking forward to a website refresh that will allow people to interact with Eastern State from around the world.

For more information, visit EasternState.org

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Jean Sachs, CEO of Living Beyond Breast Cancer, begins our new monthly series on breast cancer.  Living Beyond Breast Cancer is a national resource center based in Philadelphia, that follows women – and men – through diagnosis and treatment options, through work, family relationships and the financial burden, and all the other aspects living with a chronic and life-threatening disease.   Jean discussed the first steps after the diagnosis, and the diagnosis process itself.   For many, like me, you learn of your breast cancer not from a caregiver, but through an online portal.  Jean explains the legal requirements placed on healthcrare providers to guarantee vital information is shared with the patient.  She spoke on the importance of choosing the right doctor and the advantages in access to new treatments and cliniccal trials that you get when you choose a provider that specializes in breast cancer.  We discussed sharing the news and how it can affect you and your friends and family. 

Living Beyond Breast Cancer offers support to patients and caregivers.  It is a complete resource center from information about breast cancer and treatment, financial matters, to content on emotional health, family and personal relationships, wellness and body image, side effects and living with metastatic breast cancer.

The Breast Cancer Helpline will match you with a trained volunteer who has a similar experience to you, whether that be diagnosis type, stage, age or concern.  In addition to listening to you and discussing your feelings and concerns, their volunteers can direct you to resources such as support groups, wigs, and financial help.  You can contact them online or by calling 888-753-5222.

Find Living Beyond Breast Cancer online at lbbc.org

NOTE:  

Rutgers Cancer Institute of New Jersey offers a FREE statewide program with the NJ Department of Health, ScreenNJ, which provides education, screening navigation, and clinical screening services available to all residents of New Jersey, regardless of their health insurance or immigration status.    Contact ScreenNJ patient navigators for free help scheduling your cancer screening regardless of your income or health insurance status. Transportation, food, or other barriers in the way? Navigators can help address those factors so that each person can get to their screening appointments.   Email [email protected] or call (833) 727-3665.

Learn more at https://screennj.org/

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Monica Vaccaro, Director of Programs, and Dr. Drew Nagele, Neuro-psychologist and research site investigator, discussed the Brain Injury Association of Pennsylvania.  We talked about the types of brain injuries, from the common blow to the head that makes you see stars, traumatic injury from accidents, and now, the rising number of brain impairment from Opioids misuse.  

The Vision of the Brain Injury Association of Pennsylvania is a world in which all people with brain injuries and their supporters are leading fulfilling lives and are empowered to participate in their communities.  

They spoke of the Intersection of Brain Injury and Opioids Misuse; persons who have sustained a Traumatic Brain Injury (TBI) are more likely to misuse substances because of their brain injury, while persons with opioid use disorder are more likely to sustain a brain injury as a result of their opioid use.  In both cases the ability to seek and follow treatment is impaired; what might look like lack of motivation, poor performance in treatment, or a mental health disorder might be untreated brain injury.  They spoke of the need for healthcare professionals to be more aggressive in screening for injury and to approach treatment geared to the impairment.   

We also spoke of the work Dr Nagele is monitoring - researching and screening persons incarcerated for brain injury, the numbers are greater than expected and impact the individual’s success after release. 

For more information on PIA programming for caregivers, persons with brain injury and their advocacy work, go to BIAPA.ORG or call the Brain Injury Resource Line: 800-444-6443

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