Spotlight On...Gwen Petersen
A Determined ALS Fighter
How does a vibrant young woman handle the life-changing diagnosis of ALS? If you’re Gwen Petersen, you grab hold of your loved ones and say, “Let’s fight!”
Gwen was born and raised in Connecticut. Her parents, George and Debbie Stiewing are proud parents of four children, all were active in sports while growing up. Their youngest daughter, Gwen, found her joy in swimming. She started to swim competitively as a child and when she wasn’t racing, Gwen could be found at the beach or in the pool at her family’s condominium. “I have great memories of many kid meetups and birthday parties at that pool,“ Gwen shared.
Growing up, her original ambitions were to be an artist or a nurse. “I remember saying that I wanted to help people,” Gwen said. In college, she studied Art History and she was fortunate that one of her professors was a mentor and became a personal friend.
After graduating from college, she decided to turn her career focus to Human Resources and found she had a real passion for the work. “I am the first person the candidate talks to and represent the ‘face’ of the company,” Gwen said. “I love it and feed off of the enthusiasm that new hires bring on board.”
In 2013, Gwen decided “to shake things up,” and left Connecticut for San Francisco, California. There, she continued her career in Human Resources and after just two weeks in her new city, Gwen met her now husband, Nathan Petersen.
“In a city with almost one million residents, Nathan and I were actually living on the same ‘street’, really best described as an alley,” she shared. “We had no idea until we met each other at a local bar.”
Nathan recalls an immediate bond with Gwen, “We were super close immediately and discovered a shared love of travel, family, good food and drink.”
“There is a long-standing joke that I picked him up,” added Gwen, with a smile. “But I'll never cop to that.”
Gwen and Nathan were married in 2017, in an intimate ceremony at an outdoor park in New York City, followed by a dinner party. But, within the first year of their union, they would have to face some serious challenges that most couples have a lifetime to prepare for.
Gwen first noticed symptoms in her left foot and a loss of balance which caused her to experience frequent falls. “You sort of lose track of the number after a while,” she shared. These symptoms eventually led her to the the ALS Center at UCSF, where she was diagnosed in May of 2018 at the age of 32.
“A common misconception is that ALS is an ‘older person's’ disease,“ states Gwen. ”However, more and more young people, with no family history, are being diagnosed.”
“My husband is my number one supporter,” she shared. “Nathan has assumed this new, dual role as my spouse and my caregiver. It’s how he’s handled it that’s so inspiring to me – with love, bravery, and patience.”
“There are many things that I can no longer do because of ALS,” she shared. “My hand and grip strength have been compromised. I can no longer open jars, unscrew bottle caps, button pants and shirt buttons. Out in public, I’ve gotten the ‘side eye’ on a few occasions when people see my husband buttoning my pants.”
Gwen’s news completely shocked her entire family and the physical distance between them was heartbreaking to bear.
“When I first learned about Gwen’s diagnosis, I felt helpless,” shared Gwen’s mom, Debbie Stiewing. ”It was so hard not being able to comfort my daughter and make this awful disease go away. On top of being so scared as to what the future will hold for her.”
“But her father and I saw how brave, positive, proactive and strong Gwen is,” Debbie continued. “Knowing that she has a kind, caring and smart husband who loves her unconditionally helps to ease the pain. Also, of course, the love and support from our family and friends.”
Gwen is grateful for her family and close friends, “They are my support system and protectors. There is a lot of love and they provide encouragement with their positive attitude and a good laugh.” Most of her immediate family lives on the East Coast, and she misses them dearly. “My mom is a constant source of inspiration”, Gwen shared. “She is the biggest influence on my life. My mom never stops doing for others. She writes cards to people, no matter what the occasion, and I do love a good card!”
Gwen’s mom Debbie, along with her dad, George, regularly attend support groups run by The ALS Association Connecticut Chapter and find it a safe space to speak freely, gain insight, support and knowledge.
“We are very fortunate to have the Chapter, and attend monthly meetings for caregivers for people living with ALS.” said George. “These meetings are extremely helpful in dealing with everyday problems you may encounter along the journey.”
Gwen and Nathan try to attend a monthly Chapter support group, but the closest one for them is over an hour away, making their attendance less frequent than they would like.
“In general, getting to and from appointments has been, and continues to be, my biggest challenge.” she shares. “I have stairs inside of my building and I can’t lift my walker up and down them or, in/out of a vehicle. My transportation challenge has many different layers and I haven’t found a service that addresses all of them.”
“At times, the challenges of dealing with ALS are isolating and overwhelming,” Nathan admits.
Being diagnosed at such a young age has created an urgency for Gwen, and she now uses her passion and tenacity to advocate for further advancements in ALS research. When asked to describe herself, Gwen replied that she is, empathetic, passionate, and stubborn. “Though I know I shouldn't carry my walker up the stairs, sometimes I do,” she says. “My husband is going to read this and cringe!”
Gwen continues to receive her care at the ALS Center at UCSF, an ALS Association Certified Center of Excellence. “At clinic, the patient meets with doctors and clinicians from several specialty areas. They monitor patients’ progress and as symptoms evolve, they provide suggestions to best handle these changes.” Gwen said.
She also participates in BrainStorm Cell Therapeutics Phase 3 NurOwn ® trial through the Forbes Norris ALS/MND Clinic and is using social media platforms, like Instagram and Twitter, to help recruit additional study participants. Gwen strongly encourages other people living with ALS and their families to get involved in ALS research and advocacy, and to follow The ALS Association Golden West Chapter on social media for the most current updates and news.
“Using social media channels, like Facebook, Twitter, and Instagram, allows individuals to share their voice collectively to influence policy makers,” said Gwen. For example, recently on Twitter, The ALS Association posted an advocacy alert to ask your members of congress to waive the five-month Social Security Disability (SSDI) waiting period. You can also use these forums to share your experiences with other individuals and families navigating a life with ALS.”
Gwen’s story was recently featured on The ALS Association’s Instagram account, “I’m 33 years old, I have ALS, and I’m going to keep moving until I no longer can."
"ALS is impartial," she continued. "It knows no bounds. This is anyone’s disease. Participation in research is critical if we want to end ALS. Organizations can set up all the best studies in the world, but without participation, how can we move the needle toward finding a cure?”
Gwen suggests other ways to participate. “You can sign up for the National ALS Registry or, ask your care team about research that your ALS center might be conducting. Sometimes, this is a simple blood draw.”
“Our number one focus is participation in research at local institutions and advocacy along that path,” Nathan adds, who along with Gwen, has participated in multiple studies as a control or caregiver participant.
“Research is the path to new and evolving data approaches that will make progress in the ability to diagnose the disease and to find new targets for effective treatments and cures for ALS.”
Gwen also urges others to advocate for themselves. “Don't be afraid to ask your questions,” she suggests. For example, if you attend a multidisciplinary ALS clinic and you see a speech pathologist, it's likely they are explaining the importance of voice (and message) banking. It's ok to ask for a handout that provides a list of available programs or, asking if certain programs requires the purchase of equipment (e.g. a microphone).”
Although thousands of miles separate them from their daughter, the Stiewing’s also show their support by being involved with their Chapter’s community outreach events. This past September, George and Debbie, along with their family and dear friends, participated in the Connecticut Walk to Defeat ALS. Their team, “Gwen Strong”, raised nearly $10,000. “We exceeded our goal by leaps and bounds and this gave everybody a true feeling of accomplishment toward a worthy cause,” shared George.
Gwen and Nathan themselves have participated in public awareness events and activities, like the 2018 ALS Awareness Day with the San Francisco Giants. They also shared their story in the 2019 #VoiceYourLove campaign, to raise awareness of ALS and one of its many debilitating symptoms: losing the ability to speak. As Gwen stated in her online video, she is lucky that she still has her voice to tell her husband, friends and family that she loves them. She and Nathan encouraged others to do the same.
This devoted young couple could not have anticipated facing such adversities at this at this stage in their lives together. “ALS has changed so much about our life,” Nathan shared. “I've never felt as scared, heartbroken and yet determined to keep on as long and as strong as we can.” Daily routines have changed and simple daily tasks require more coordination and planning. But we keep trying to do all of the things that are important to us.”
Gwen and Nathan continue to celebrate their love together, despite the many challenges of living with ALS. Their shared passion of travel recently took them to Mexico where Gwen discovered that swimming in the heated pool was very therapeutic and helped with her spasticity. “I’ve always been a bit of a fish,” Gwen shares, “Swimming makes me feel free.”
The ALS Association Golden West Chapter applauds Gwen’s resilient spirit and her and her family’s dedication to finding a cure and advocating to raise awareness for ALS.