Volunteer Spotlight Archive

Caroline Williams, currently of Portland, Oregon, grew up in the United Kingdom. As a child, her family moved frequently, including spending several years in Cardiff, Wales. Caroline studied English and American Literature at Kent University in Canterbury, England and, following graduation, moved to Spain where she lived and worked for a year. Linguistics has always been a fascination for Caroline who became fluent in Spanish during her time there.

In the early 80s Caroline worked for a Computer Lease & Rental company in London when the company transferred her and a colleague to establish a branch in New York City. During the next decade, Caroline married, moved several times, and had 5 children within 10 years, finally settling in Northern Virginia.

Caroline has had several careers throughout her life, including founding a non-profit in 1989 called Mother’s Access to Careers at Home “MATCH”. She said, “Trying to balance my career and family was insane. I became a fanatic about mothers having flexible schedules,” noting that the technology existed, even then, for women to work remotely. Caroline became an active advocate, writer, and spokesperson for remote work, co-authoring a book in 1999 (Moneymaking Moms: How Work at Home Can Work for You) and leveraged the media to promote her message, including appearances on network and local TV and in various print articles.

Caroline was diagnosed with scalp psoriasis in the early 2000s, following an intense period of duress. After several years of struggling (and failing to improve) with topical treatments, she was fortunate to find a dermatologist who prescribed biologics; an experience she describes as “life changing.”

In August of 2018, she returned to the United Kingdom to care for her ailing mother. She also had to confront the challenges of getting the care and medications she needed through the UK’s National Health Service (NHS). In 2020, Caroline moved back to the United States and relocated to Portland, Oregon to be close to her son, Jake. Fortunately, she is now back on biologics and doing much better!

Caroline has been volunteering with NPF for a year. Initially, she worked with the Research and Medical Team on an outreach project verifying the contact information of providers and clinics. In September 2021, she started as an admin volunteer in the Patient Navigation Center in Portland. In a short time, Caroline has become an integral part of the team, sending out literature and samples as well as Our Spot Welcome kits to constituents. Jane Slayden, Director of Patient Services at NPF, said, “It is a joy to have Caroline come in each week to help Patient Services. She is always cheerful and has a devilish sense of humor.”

When Caroline is not busy working or volunteering, she enjoys exploring Portland. Her daughter lives in Seattle so trips to Washington are frequent. She also enjoys crossword puzzles, reading and experimenting in the kitchen.

Savanna Braun of Spring, Texas has been involved with NPF since attending a “Know What’s Possible” education event in Houston in 2019. She says, “I started experiencing arthritis symptoms at 14 and psoriasis at 18, but it took a long time to get diagnosed. Once I finally got my diagnoses, I went all in on educating myself about the disease.”

At the “Know What’s Possible” event, Savanna received tickets for the Pstamp Out event where she learned about NPF’s advocacy work. In the two years of volunteering with NPF, Savanna has attended two Capitol Hill Days and become chair of the Central Region Advocacy Committee. Additionally, she is very excited about her recent appointment to the Capitol Hill Day Committee. “What I enjoy most is the general process of reaching out to legislators to enact real change, which is almost always a long process, but I’m doing something about our issues as a psoriatic community and the patient community at large,” says Savanna about her advocacy work with NPF.

“I chose to join NPF because it was the very first patient advocacy organization I was introduced to and felt so welcomed. It was inclusive of both the skin disease and psoriatic arthritis,” explains Savanna. “The foundation was also trying to increase education for dermatologists treating POC [people of color] because it is a major issue in healthcare, and really took seriously the legislative issues of having psoriatic disease. It stood out to me because of these things, and I wanted to help in any way I could.”

We are fortunate Savanna has chosen to share her time and talents with NPF.

Selli Abdali of Cherry Hill, New Jersey is a medical student at the Philadelphia College of Osteopathic Medicine. Following a research year in dermatology, she is preparing for residency applications and intends to practice pediatric dermatology.

Selli was diagnosed at age 10 with plaque and scalp psoriasis. Her childhood was difficult because her parents were not educated about the disease. She remembers her mother insisting she cover her arms and legs with pants and long sleeves. She was not allowed to wear dark colored clothing and only had light colored bedsheets that she would vacuum before making the bed each morning to hide the flakes. Her parent’s ignorance on the disease and their efforts to protect her from what other people may say, made her feel embarrassed, making it very challenging to feel comfortable in her skin.

Selli feels gratitude towards her dermatologist, Dr. Justin Green, who has been treating her for 18 years. She remembers how he would touch her skin, something her own parents would not do. It was her personal experience with the disease and Dr. Green’s care which led her to pursue a medical career.

Selli joined NPF after discovering a research article published by the University of Pennsylvania, “Stigmatizing attitudes towards persons with psoriasis among laypersons and medical students”. Having experienced stigmatizing attitudes in public herself, Selli understood the attitude among the public but was surprised to find out there be a stigma amongst her colleagues. As a medical student and future physician, she wants to be an advocate for people with psoriasis and educate those in the field about psoriasis.

Selli has served as a One to One mentor since October 2020. She has had three matches during the past year, all international constituents from India, Morocco, and the UK. Also, in her NPF volunteer role, Selli was interviewed for a CME webinar with the Annenberg Center for Health Sciences. She also spoke at the Philadelphia Pstamp Out and at the Team NPF Walk.

In August, immediately following the Taliban’s takeover in Afghanistan, Selli was contacted by the Temple Emergency Action Corps, a student-run organization at the Lewis Katz School of Medicine at Temple University. As the only known medical student in the area fluent in Pashto (one of the primary Afghan languages) her knowledge was critical as the flights of refugees began to land at the Philadelphia International Airport. Selli volunteered for many weeks at the airport as over 27,000 evacuees arrived. Her family has been involved preparing hot tea, chicken, and rice for the refugees. They also have been collecting clothes, hygiene kits, baby supplies and cash to assist the traumatized refugees.

The following was written by Daniel McCunney, Associate Director, News and Media Relations, and appeared in the Philadelphia College of Osteopathic Medicine (PCOM) newsletter: She instantly felt a unique bond with the arriving families. “My family came to America in 1989 and I have four older brothers who were all born in Afghanistan,” said Abdali. Two of her initial goals after becoming a physician were to travel to Afghanistan and provide medical care. Unsure if that possibility will ever become a reality, Abdali describes the arrival of Afghan evacuees in Philadelphia as “Afghanistan coming to me” and feels honored to be able to help both the Afghan and medical community.

In August, as the third plane landed a local news crew arrived, interviewed Selli and caught images of her mother and sisters-in-law arriving with meals for the evacuees.

Mark Parikka first noticed small bumps on the skin around his ankle in 2006. Over the course of the year, there were additional patches on other areas. He sought out a diagnosis and the dermatologist confirmed through biopsy it was psoriasis. At this point, Mark said it was easily managed with topicals. In 2007, while vacationing in Hawaii, Mark likely developed an infection from some open skin. The infection became very serious, he had a huge flare and developed erythrodermic psoriasis. Mark was hospitalized for a week and immediately prescribed biologics by his doctor. Mark plateaued on two drugs before the medication “kicked in”. He is happy to report he has had excellent results, and in the past ten years has only had occasional and minor skin patches.

Mark researched and found NPF in 2007. He has been an active member of Southern California chapter, attending support groups, Team NPF Cycle and every San Diego walk. He has been very involved with the Western Advocacy Committee and attended Capitol Hill Day in 2010. Mark has attended conferences in San Francisco and DC. He has been asked to speak at NPF conferences.

As part of the Founder’s Day Celebration in February 2021, Mark reflected on what the NPF community means to him. He wrote, “Beyond the obvious of making a difference in our disease, of raising funds for better treatments and the goal of finding a cure, I have made lifelong friends, enriched my community, and made others aware of a disease they either didn't know about, or had misconceptions about. While the NPF isn't perfect and I've had personal disagreements about some aspects of the mission, I can honestly say that on balance I am a much better advocate because of my NPF involvement.” 

Mark resides in San Diego with David, his husband of nearly 34 years. Besides volunteering for NPF and other worthy causes, he also enjoys tennis, cooking, sporting events, dinner/game nights with friends, theater, and concerts.

Usually, our purpose in life happens unexpectedly. Sabrina Skiles of Broomfield, Colorado is an example of this occurrence. She is an active blogger, patient advocate, author, influencer, and educator for those living with chronic disease.

Since finding NPF in 2014, Sabrina has participated in conferences (More than Skin Deep 2014, National Volunteer Conference 2015, Research Trainee Symposium 2018, Know What’s Possible Conference 2019 and Healthier Together Community Conference 2021). She pulled together a team for the 2016 walk in Houston in honor of her mother, who also had psoriasis. She also began mentoring through the One to One program in 2016 and attended Capitol Hill Day in 2018.

In August 2019, Sabrina was diagnosed with breast cancer and following surgery, radiation, and chemotherapy, gratefully joined the survivor community. Although she had connected with HealtheVoices in 2017 with her psoriatic disease, she has expanded her advocacy and education work to the breast cancer community. Sabrina sees her work as a way to move beyond being a “patient” and to pay it forward for all of the support she received. Especially the support she received from family and friends during her difficult breast cancer treatment.

Sabrina understands as an advocate and educator, she has a responsibility to remain current on guidelines and treatments and appreciates the reliable information available through NPF. She said, “I love being able to tell my story in a relatable, authentic yet reliable way. And the best part about telling my story is connecting with others to let them know they are not alone with a disease that can feel so isolating sometimes. That's the best part!"

Sabrina and her husband Chris have two young boys, Declan is 5 and Beckett is 3.5. They love to travel, try new food and binge watch new Netflix series. You will always see Sabrina with coffee (or wine) in her hand, and describes herself as a “coffee snob and self-care enthusiast."

When Brenda Kong was diagnosed with psoriasis in 1993, her family had been in the U.S. about 11 years. “My parents spoke limited English, and there isn’t a word in our language for psoriasis,” says Brenda, who was born in Cambodia and whose parents spoke Khmer. “They didn’t understand what it was, and for a long time, they couldn’t understand why Western doctors couldn’t heal me.”

Brenda was diagnosed with psoriasis at 12. Her psoriatic arthritis diagnosis was not until age 22. As a young athlete, her aches and pains were attributed to sports injuries and overuse.

Through internet message boards she learned about the NPF San Diego conference in 2004 and registered immediately. She travelled from her home in Oakland to the conference and remembers the first person she met was Matthew Kiselica, who was in a wet suit. She made many friends and connections at that first conference - people who remain friends to this day. Brenda joined Jody Kim-Eng and Diana Cordio and became co-founders of the Bay Area Support Group. The three also began annual fundraisers. Brenda is involved with advocacy and has participated in three NPF Capitol Hill Day events.

There really is not much Brenda has not done for NPF. In addition to her advocacy work, she has attended numerous conferences, galas, and Team NPF events. In October 2020, Brenda was a presenter at the first virtual Community Conference, demonstrating how to prepare Miso Tuna Salad. The feedback from the demonstration and about the recipe was very positive.

Brenda said that of everything she has done for NPF over the years, she is most proud of her 2020 DIY fundraiser. Brenda turned 40 in June 2020 and in a typical year, there would have been parties and gatherings with family and friends. The pandemic made this impossible, so Brenda took her creativity and love of Asian cooking to offer, for a donation, an amazing plate of Bai Mon: Cambodian Chicken Rice. Brenda said donations poured in from family and friends from around the world. She raised $1,024 dollars which were matched by the company of her boyfriend, Anthony, for a total of $2,048.

Brenda is an inspiration to many in the community. Recently, she wrote this reflection:

“I’ve had psoriasis and psoriatic arthritis since I was 12 years old and it’s shaped every single aspect of my life, from the introverted personality to the way I walk due to the extreme arthritic pain in my joints. I was angry for a long time over how this condition has wrecked my body and health, but along with the ugly comes so much beauty. I’ve learned that I am capable of so much, when for so long I felt stifled, I’ve learned how to do things .within my physical limitations, I’ve learned that my mind, my drive, and my passion never had limits. My body may be grounded, but my mind, it flies. Best of all, I learned how to have a positive and happy life when for so long I let myself wallow in darkness; it is in the light that I’ve learned to love myself with all its scars, broken parts, and imperfections.”

Todd Bello of Fort Myers, Florida grew up and raised his family in Long Island, New York. He has a son, Michael (31) and daughter, Jackie (29) who are successful adults, living in New York.

Todd had several careers throughout his life. He owned multiple businesses and was a volunteer firefighter and EMT-D. In 1995, he was promoted to lieutenant at the Stoney Brook Fire Department and named Firefighter of the Year. Todd was working towards a career with the New York City Fire Department when the 9/11 terrorist attacks occurred. He worked for the U.S. Post Office for 14 years, before the pain and embarrassment of his psoriatic disease forced an early retirement. 

Todd was diagnosed with psoriasis and psoriatic arthritis at age 28. His plaque, scalp, and inverse psoriasis has been severe. His treatment history is long and complicated and includes multiple oral, topical, and biologic treatments. Todd has participated in clinical trials, tried supplements, diet alterations, and lifestyle changes. In 1996, after reading an article in an NPF publication, he even traveled to Israel for month-long treatments in the Dead Sea. Todd remembered his time in Israel fondly and returned again in 1999. Not only did he have great results from the “sun and sea,” but this time also gave him an opportunity to connect with other people living with psoriatic disease from around the world. Todd’s passion of connecting and mentoring others has continued both formally and informally to this day. A friend described Todd as a “healer, helper and fixer.” A therapist called him an “empath.” Todd says that volunteering and helping others is his calling and his passion. 

Todd began contributing financially to NPF in the 1990s. In 2011, he connected with NPF as a Volunteer. He said, “I found it necessary to volunteer due to the fact nobody knew of our disease. I wanted to raise awareness. I wanted people to know psoriasis wasn't contagious, because everywhere I went people treated me like I was. I didn't want others to be treated in this manner.”

There really is not much he has not done for NPF. In addition to being an original mentor with the One to One program, Todd has attended numerous conferences, and events. He participated in the FDA patient focused drug development meeting in 2016 and attended Capitol Hill Day in 2016, 2017, and 2018. He has been nominated for Volunteer of the Year in 2013, 2017 and 2020.

Todd said, “I’m very passionate about helping people in the psoriasis community. Thankfully, we have an organization that does everything in their power to help people with our disease. The National Psoriasis Foundation has helped me to gain control of my disease by keeping me informed about the newest treatments available. Thanks to the efforts of the NPF and its members, society today has a better understanding about psoriasis. Much more work needs to be done with insurance and medications, but we as patients are much better off than when I was first diagnosed.”

The Browning/Dvorak family are rock stars in the NPF community. Kathleen Browning had psoriasis for many years before her son, Thomas was diagnosed at age six. Kathleen shared, “The scariest aspect of anything is the unknown. Knowing that there is no cure, I wanted to make sure my son was well versed in his disease. The more he could understand what his body was doing to itself, the more power he had over his psoriatic disease.” Fortunately, Kathleen’s internet search landed her on the NPF website where she discovered “an abundance of valuable resources.” The family began attending every event they could, learned more and became even more involved.

The Browning/Dvorak family attended their first event in NYC in 2012, where little Thomas spoke. The family attended the first NYC walk later that year, and every one since.  They also volunteered at the first NYC Cycle which occurred on Thomas’s 11th birthday in 2015. Thomas has been a Youth Ambassador since 2012. Kathleen has been an active member of the Youth Advisory Group since it began in 2014. They have raised funds, attended conferences, done podcasts, and advocated. There really is not much this family hasn’t done to raise awareness and funds for research!

Kathleen said, “Our whole family volunteers because we appreciate all that NPF has done for the psoriatic community - our community - and we believe in giving back. We have gotten so much out of our involvement with the NPF, and the most wonderful benefit has been meeting all the amazing people living with psoriasis. I will never forget the look on my son’s face when we attended our first National Volunteer Conference in Chicago . . . and there were other children there! He has made lifelong friendships, forged in psoriasis. I also have made many friends across the country, thanks to our involvement with NPF.”

Bev Bromfield summarized our appreciation for the family when she wrote, “Kathleen and her family are always willing to step up and help set-up for events and participate! They are truly committed to finding a cure for the disease and making life better for others. They are an amazing family and it's a true honor knowing them!”

Amber was diagnosed with scalp PsO at age 15 and, at the time, because of her age and finances, treatment options were limited. She was grateful to find relief from several of the products which have received the NPF Seal of Recognition. 

Amber became an NPF Youth Ambassador in 2020, joining eight other young people from across the country. She has enjoyed meeting the other Youth Ambassadors and participating in Team NPF activities. Virtual events have enabled her to attend Pstamp Outs and NPF Cycle events beyond Florida. She is excited to share a patient’s prospective with residents during Grand Rounds at Mt. Sinai later this month.

Amber lives with her mother, Monica and two cats, Tigger and Luna in Port St. Lucie, Florida. In addition to NPF, Amber also volunteers with the International Youth Neuroscience Group, Treasure Coast Hospice, and a free health clinic. She especially enjoys her work at the health clinic where she can use her Spanish to greets patients, answer questions and help them with forms.

Amber is a 2021 high school graduate who will be heading to prestigious, Barnard College of Columbia University in New York City in the fall.

Kendra Clement, who works for Novartis, learned about the National Psoriasis Foundation through her travels to dermatology clinics. She appreciates the strong partnerships NPF has with doctors and companies and said whenever she visits clinics, there are always NPF materials available. Kendra appreciates how the Foundation creates and is connected to amazing resources for patients. She is impressed by the advocacy and said NPF has the most active and organized Volunteers.

Kendra has served as the Novartis Team Captain of the Dallas Team NPF Cycle since 2016. She has always been a champion for the Foundation, especially during the pandemic, and has even involved her sons, husband and others. In 2020, she participated in seven cycle events, three walk events, PsA and PsO Virtual Active Days and our first annual Team NPF Run. Kendra said her family has enjoyed doing something “normal” which also helps people during the pandemic.

Kris Bockmier said, “NPF is so lucky to have Kendra on our team! If I had to use one word to describe Kendra’s commitment to the National Psoriasis Foundation and people living with psoriatic disease it would be 'dedicated'. Thank you, Kendra!”

Noelia Ferreyra, an immigration attorney in San Diego, first learned about NPF in 2009 when she came across information about a More Than Skin Deep conference. The conference sparked Noelia’s interest in the NPF community, and she immediately got involved in Team NPF events.

In years past, she has been very active in the San Diego planning committees, procuring donations and organizing. She has also been involved with Advocacy efforts, traveling to Sacramento to meet with state representatives and participating in two Capital Hill Days.

Noelia has attended many NPF conferences, including the 2019 Volunteer Conference in San Francisco, where she met her best friend and fellow volunteer/mentor, Stephanie Waits-Galia.

Her personal highlight has been her five-plus year tenure as a One to One Mentor. Since this time, she has mentored 28 people, including several Spanish speaking constituents. We are so grateful she is willing to share her experiences and everything she does to further the NPF mission.