Team of the Week | Pennsylvania Delaware Valley

Captain: Michael Rankin
Connection to lupus: Michael’s sister, Jeanne, lives with lupus
First Loop: 2002

Why you may recognize Team Jeanne: This team dresses up each year- whether Harry Potter or Star Wars characters, Team Jeanne makes their presence known with a dedicated ensemble costume and speedy runners!

What inspires Team Jeanne: Fitness is very important to this team, as Michael is training for the Rankin Birthday Workout, where he will carry 41 people up the Art Museum steps in just a few days!

You can join his efforts here!

Fitness has also kept Jeanne going despite many challenges living with lupus. She ran her first 5K at the 2007 Loop! Says Jeanne: “In 2007, it hit me: RUN and FINISH the Lupus Loop with my team. This motivated me to talk with my doctors and start running again (1999 Doctors told me no more running). I started slowly learning not only to run but to listen to my body instead of fearing it. My doctors were astonished with the improvements in my health. My depression virtually disappeared, and I started living life instead of dreaming about it from a hospital bed.”

Captain: Cheri Perron, a dedicated LFA volunteer and educator
Connection to lupus: Cheri has had lupus since 1994
First Loop: 2001

Who are Cheri’s Crusaders? Mostly family, friends, Cheri’s church family and her husband Ken's co-workers. The most Crusaders in a year has been around 35 people, and the youngest Crusader was 6 when she first walked and is now 12 and has attended every year!

Cheri says that her team keeps coming back to the Loop because she is very persistent in getting them to join. As she puts it, “My people come to the Loop because they know if they don’t sign up, they’ll get a call from me harassing them for not registering!” Cheri jokes, but her husband Ken says, “People walk to support Cheri because they love her and because she has touched the lives of so many and given so much of herself for this cause.”

What inspires Cheri: When Cheri was diagnosed with lupus, she, like many others, wanted answers. How did she get lupus? Why did she have lupus? At the time, she was looking for answers to a medical condition that she and many rheumatologists did not fully understand. Cheri also sought support from others who had a better grasp of lupus. Through 18 years of attending the Loop, Cheri knows that she hasn’t found all the answers, but she did find a community that helped her come to terms with lupus. “I’ve learned that everyone’s journey with lupus is different, so I try to provide the same support I received when I was first diagnosed. After 6+ years of struggling to find an accurate diagnosis, I want to make sure that no one else has to go through the trauma of not knowing what’s causing their symptoms and not being believed when they say something is wrong. I want safer and more effective drugs—simply put, I want a cure.”
 

Captain: Francisco Cruz
Connection to lupus: Francisco’s brother, Alex, passed away from lupus in 2016
First Loop: 2016

Why you may recognize the Alex Cruz Memorial Team: Any anime fans around? The team shirts are designed with an anime character on the front to celebrate Alex’s love of anime!

The story of the team: Alex Cruz was diagnosed with lupus as a freshman in college. Though lupus is often incorrectly thought of as a 'women’s disease,' lupus DOES occur in men and can be more aggressive in men. Alex eventually transferred schools to be closer to home, graduated from Rutgers University, and got a job with the government. 

Unfortunately, around 10 years after his diagnosis, Alex passed away in 2016 at the age of 29. Team captain, Francisco, honors his brother’s memory in many ways, one being organizing the Alex Cruz Memorial Team each year to attend the Loop. Thanks to their many passionate family members and friends, the team has raised over $7,000 in 3 years!

And Alex’s group of family and friends keeps growing: this year, an 8-month old baby will be cheering the runners on at his first Loop! Though the team may live far from each other, they gather every fall to remember Alex and walk and run for the many people living with lupus who cannot walk or run in the Loop. Unfortunately, they join other families at the Loop who lost a loved one to lupus, but have hope in the future of lupus research, and expect to gather for many more years.

Captain: Lou Ackler
Connection to lupus: Lou’s daughter, Wendy, lives with lupus
First Loop: 1993 (year 2 of the Loop!)

What inspires the team: The team walks for Wendy Dion. Wendy was diagnosed with lupus 28 years ago, shortly after the birth of her son. At first, symptoms like high blood pressure, kidney problems, and fatigue manifested; though she was given chemotherapy and steroids, her kidneys began to fail. Lou donated his ’68-year-old kidney’ to Wendy in 2010 but she now receives dialysis three times per week to wait for a new kidney. In the meantime, Wendy babysits her grandchildren while maintaining her ‘feisty positive attitude,’ as Lou puts it! Wendy is a true lupus warrior- in addition to having lupus, she worked tirelessly for years as a nurse. Her incredible family has provided never ending support to Wendy from day 1 of her diagnosis and team members have traveled all the way from California and England to attend the Loop!

Why the team fundraises: We’d be remiss if we didn’t note the incredible fundraising impact that the team has made. The Family & Friends of Wendy Dion has brought in is over $25,000 in the past decade alone! As Lou says, the team fundraises because they see the hope that stem cell and genetic research offer to people living with lupus (more information on stem cell research here).

Captain: Deb Jepson
Connection to lupus: Deb has lived with lupus since 1995
First Loop: 2002

One word to describe Team Captain Deb: Dedicated! Deb started attending the Lupus Loop because she wanted to do something—anything—to talk to people who understood what she was going through. Turns out, this natural fundraiser and dedicated volunteer was a perfect fit for the Chapter! She served as Chair of the Board of Directors and is continuously educating herself on lupus and volunteers at the Lupus Loop every year.

Not only is Deb dedicated to this cause, she is also dedicated to her work, and is very transparent with her coworkers about her diagnosis. These coworkers are hugely supportive of Team Discovery, as are her family and friends. In fact, in 2006, the team had a brand new US citizen join their team as the first thing she did after arriving in the country. A dear friend arrived at the Loop just in time to walk with her newly adopted daughter! 

Deb fundraises because research and community support are meaningful to her—but as she says, while research takes place, building community is crucial in the meantime, especially to people newly diagnosed. For her, resources like support groups, webinars, and having someone to talk to made all the difference when she was diagnosed. In the chronic illness community, people want to know that they are not alone.

Why ‘Team Discovery?’ Like many of us, Deb is hoping for a discovery of a cure and further treatments for lupus. But years ago, when she was renaming her team, she was able to see the Space Shuttle Discovery launch from Florida! This incredible scientific achievement remains inspiring to her and gives her hope for future scientific breakthroughs in lupus.

Captain: AnnMarie (Janda) McGarrigle

Connection to lupus: AnnMarie is one of 8 Janda siblings, 3 of whom are affected by lupus—AnnMarie, her brother Gene, and her late sister Maureen, or ‘Reen.’ As lupus typically does not run in families, even AnnMarie says that this prevalence of lupus in her family is hard to believe.

First Loop: 2015

The origins of REEN’s Dream Team: The Janda family formed REEN’s Dream Team in 2015 after Maureen passed away that May. Previously, the Jandas participated at the Loop in some form since 1992, but not as a team. In fact, AnnMarie and Maureen volunteered at the Loop in team registration for over 10 years, and AnnMarie continues to volunteer each year. But in 2015 when Maureen passed away due to complications from lupus, the Jandas decided to honor her memory by banding together as one team. Since their first year as an official team, they’ve raised nearly $15,000!

Why you may recognize REEN’s Dream Team: It’s a sea of purple at the Loop—until you see this team. They wear yellow shirts, as yellow was Maureen’s favorite color, with a dancing witch on it. Maureen was always the first person on the dance floor at parties, and always referred to herself as ‘the good witch,’ so a dancing witch was quite apt for their official team logo!

With three siblings affected by lupus, the Jandas raise money for research efforts and better treatments to help the younger generation. Each October, the team dons their yellow and embodies what it means to be #JandaFamilyStrong!

Captain: Alexis Wilkerson

Connection to lupus: Alexis lives with lupus

First Loop: 2019

Alexis’ ‘test study’ and journey with lupus: Alexis was officially diagnosed with lupus 3 years ago. Prior to her diagnosis, she had to drop her last year of eligibility as a college athlete, leading her to have many unanswered health questions and embark on a life-changing health journey.

Alexis decided to start using herself as a 'test study,' and fully devoted herself to taking control of her lupus. After journaling her symptoms every day, testing different elimination diets, keeping out of the sun, taking various supplements, and exercising daily, Alexis is, for the most part, now able to pinpoint her main triggers. "I have tested my body to levels I never thought were possible and the knowledge I've gained has provided me with the confidence to continue to live my everyday life and enjoy all that I can," Alexis says, and she encourages others living with lupus to educate themselves on how to take control of their disease.

Why does the team fundraise? As Alexis puts it, "There is a light outside of being diagnosed. With proper support and education, there is a brighter side to feel better and have better control! Everyone deserves to have the same amount of resources and support across the board. Spreading information about the cause can and will expedite this!"

Captain: Jeanne Jackson

Connection to lupus: Jeanne has lived with lupus since 2005

First Loop: 2007

First off, who’s Big Pop? Jeanne walks for her dad, Lee A. Washington III—also known as Big Pop—who was her biggest supporter after her lupus diagnosis. Jeanne says, “He truly walked with me on my lupus journey.” Unfortunately, Lee passed away in 2010, the week of the Loop. Jeanne changed the team name from JJ3Littleladies to Big Pop’s Team JJ3 Littleladies to recognize her dad.

Perseverance, according to the team: This team has been with the Loop through it all, like Hurricane Sandy of 2012! Because the Loop does not cancel for anything, except a state of emergency, the team still represented at the Loop with 19 people and $2,010 raised! The year before, they braved a puzzling October snowstorm at the Loop with 29 participants and $2,070 raised! This team stops for nothing and hits their fundraising goals every year.

This year, they’re hosting a wine fundraiser at The Wine Garden in West Philadelphia on September 29. Join them for this Sunday fun day!

Pediatric lupus occurs in 10-20% of all lupus diagnoses. Meet Brooke’s Buddies, who fundraise for a cure for the next generation of people living with lupus...in style.

Captain: Jennifer Maddox

Connection to lupus: Jennifer’s daughter, Brooke, lives with lupus

First Loop: 2016

A family affair: Each fall before the Lupus Loop, Jennifer and her family host Designer Bag Bingo to fundraise for their team. But this is more than just a bingo game, as over 300 people come out every year to play!

The whole family gets involved: Jennifer, her sister Melissa, and her best friend Rachael host the event, which includes getting raffles donated, booking the venue, and selling tickets. Jennifer's mom Deb wraps the raffle baskets and helps sell tickets. Her brother and his friend volunteer at the event, selling 50/50s and raffles. Jennifer's husband Greg is the emcee of the event. And their daughter Brooke runs the night by calling bingo numbers! This event, October 19, is truly a spectacle and open to everyone, so get your tickets now before they sell out!

Why they fundraise: Brooke, now 12, was diagnosed with lupus at the age of 8. Along with Hashimoto's thyroid disease and autoimmune hemolytic anemia, Brooke has been through a lot. Jennifer wants to make sure that Brooke does not have to live the rest of her life worrying about flare ups and medication.

Captain: Joann Kent

Connection to lupus: Joann’s daughter Lauren lives with lupus

First Loop: 2019

Lauren’s lupus story: Lauren has always known she had a weaker immune system that left her susceptible to illness. In addition, she has been diagnosed with anxiety and hypothyroidism, and has high blood pressure, which is genetic. After bringing this to the attention of her doctor, her doctor was able to connect the dots and decided that all of this was cause for concern to run blood tests. Lauren was diagnosed with lupus shortly after. Though it was hard to get used to at first, Joanne says, “Lauren approaches lupus with a lot of strength and powers through emotionally.”

Advice from a parent: Lauren lives in New York, further north from Joann’s New Jersey home, which poses its own challenges in lupus. Though Lauren is an adult managing her lupus, Joann says, “We all need someone to help us process [a lupus diagnosis].”

When Lauren’s doctor suspected she had lupus and called her in for another appointment, Joann was in the middle of a very busy work week. She knew Lauren would be fine to go to the appointment alone, but dropped everything that week to accompany her daughter to the doctor. Joann says she ‘went with her gut’ to travel to New York and encourages other parents to do the same when their child is experiencing a new health challenge: “Parents need to educate themselves and support their children. There will be days when their kids are not doing well, but no matter the age, their parents still need to be there for them.”

Captain: Danielle Allen

Connection to lupus: Danielle's aunt, Adrienne, passed away from lupus in 1987

First Loop: 1992

The Allen family’s story: Adrienne Allen was a beloved daughter, sister, and aunt who died in 1987 from complications of lupus. She was diagnosed with lupus in high school, at a time when lupus was much more misunderstood and the outlook bleaker. Her mother, Ellen Allen, helped found the Philadelphia Tri-State Chapter back when it was called the Lupus Foundation of Southeastern Pennsylvania, and has worked tirelessly since in the lupus community. Mrs. Allen served on the Board from 1988 until 2004. Adrienne's sister, Lydia Allen-Berry, also served as a member of our Board of Directors and now Danielle and her sister Anica carry the torch to continue the family legacy with our Chapter. The team fundraises for research and awareness. They are unhappy with how long it takes to diagnose lupus (with 6 years on average, who isn't?) and want more treatments options for lupus that don't just treat symptoms.

Allens @ the Loop: Since the Allens have attended the Loop every year, they have many, many memories associated with it. Danielle is the third captain of the team, taking over from her sister, Anica, who succeeded their father and Adrienne's brother, Russell Allen. The team is now five generations strong! The team stops at nothing to attend; Anica recalls when Ellen was released from the hospital on a Saturday and was insistent on going to the Loop the next day! The younger family members especially love the Lupus Loop, walking it over and over until they are too tired to walk anymore!

The event has changed a lot from 1992. Registration used to take place inside the Carousel House with just a few hundred people in attendance, and now the event has moved to the fountain in front of the Please Touch Museum, closing down nearby streets with over 3,000 people in attendance. In 2010, the family decided to commemorate their long history at the Loop with a handmade quilt of every T-shirt from the event in years past. A decade later, as the tradition continues, the T-shirt collection grows. Though Danielle and Anica's memories of Aunt Adrienne are of when they were very young, they continue to keep her memory alive.