Since attending the United Mitochondrial Disease Foundation’s annual conference about four years ago, Port Washington resident Rachael Anne Pipp has shifted a lot of her energy into raising money to contribute to the organization.
It is a very personal cause for the 27-year-old Pipp, who was diagnosed with the rare disease at age 16, when a stroke landed her in a wheelchair for six years.
She started a business called "Passion for Fashion," after participating in a craft class at the Library last fall — a class that left her with more than just a . She carried with her the seed for a way to help raise money to research her disease, and took the first steps on a path that would help people with other disabilities.
Now, Pipp creates all types of duct-tape based products to sell, and donates all the proceeds to UMDF. She also recently opened a studio called Art Oasis in Cedarburg as a venue to sell the products and help others witht disabilities.
In the past year, her efforts have helped to raise about $3,000 for UMDF.
An up-close look at 'Mito'
For Pipp, mitochondrial disease means problems with her central nervous system, muscle weakness and pains, damage to her optic nerve and frequent small seizures. She also deals with gastrointestinal issues, and sometimes has trouble swallowing and talking — a symptom that usually lasts several weeks. She also has trouble dealing with extreme temperatures, and has a cooling vest to wear when it is too hot outside.
She considers herself lucky: She spends far less time in the hospital — typically one admittance a year — than other people she knows with the disease.
"Some people, my 'mito' sisters, the hospital is their second home,” Pipp said.
Pipp was diagnosed with the disease after her stroke. Until then, doctors thought her symptoms were from cerebral palsy.
The disease affects tiny energy-producing organs found in just about every cell in the human body. In people with mitochondrial disease, those organs fail and cannot convert food and oxygen into the energy needed to maintain bodily functions. Learn more about the disease on the UMDF website.
“The real hallmark of it is fatigue and weakness, for most people,” said Mary Pipp, Pipp’s mother.
It is hard to determine the number of people dealing with the disease because — as with Pipp — it is often misdiagnosed. However, the UMDF website estimates that "every 30 minutes, a child is born who will develop the disease by age 10."
While there is no cure for the progressive disease, Pipp has found taking vitamins— which Mary Pipp called the "mito cocktail" — helps provide her body with nutrients it can’t process from food.
"She's in good shape now," Mary Pipp said. "She’s been lucky."
No stopping her
Pipp does not let the disease slow her down. She is an active volunteer for UMDF, and has participated in fundraising events for mitochondrial disease research for about four years — recently hitting the streets in 30-degree March weather to do just that.
Pipp and her mother are also organizing and seeking donations for the first Milwaukee-area Energy for Life Walkathon to be held this September.
The energy Pipp has goes to help, whether it is raising money for the walkathon, making her duct tape creations to sell, or exploring another creative outlet.
Pipp has long been a creative soul — the house where she and her mother reside is filled with her handmade products and beautiful paintings. Recent creations include a duct tape Bird House as well as a stool with a duct tape mosaic design.
Knowing how much creativity has helped Pipp cope with her disease, she and her mother wanted to provide a place for other people with disabilities to have a similar experience and decided to open Art Oasis.
Located in the Washington Avenue Shoppes in downtown Cedarburg, Art Oasis is a place where artists with disabilities can interact with each other while creating art to sell for a charity of their choosing.
"This all started because Rachael loves art," Mary Pipp said. "My goal was to have different outside vendors that are raising money for their cause, either disease or disability, and their proceeds will go to that."
Art Oasis was also started as a way to offer day services for adults with disabilities, with an art-based program running from 10 a.m. until 2 p.m. on Mondays, Wednesdays and Fridays. The program cost is $12 an hour. Mary Pipp is working to secure county and state funding to help people who cannot afford to pay that cost.
"(It's) mostly just to socialize, have fun — it's a group thing here, we eat lunch together. Start out with a positive thought, discuss what that means … my main ruling in here is treat others nicely, like you want to be treated," Mary Pipp said.
Art Oasis offers items for sale created by participants in the program; proceeds go to the creator’s charity of choice.
The studio will only be open for the part-time hours until they can bring on another part-time teacher or some other type of help. Rachael Pipp is enjoying the adventure.
"I love to socialize," she said.
To learn more about Art Oasis, email firstname.lastname@example.org. For more about Pipp's products or donating to her cause, email amgirlPipp@aol.com. Pipp sells products through her Facebook page, and information and product photos can also be found in the Patch directory. To donate directly to UMDF, visit its homepage.