Welcome & thank you for stopping by & visiting my, "FirstGiving Page!"
My name is Donna Marie, & I am the liaison for our, "9th Annual Philadelphia Tri-State Sjogren's (pronounced "show-grins") Walkabout & Autoimmune Disease Health Fair." In addition, I am a volunteer; board member, committee member (Walkabout, Sip For Sjogren's, Awareness Luncheon & Regional Support Group) & patient. I do my best to remain positive & my goal is to do whatever I can; helping in raising funds for a cure, participating in case studies, as well as being an advocate by networking & spreading awareness of this often; chronic, debilitating, hidden & undiagnosed or misdiagnosed disease. Quite often, family & friends do not understand, they think we should feel good, when we look good. I encourage members; to take one day at a time, seek positive relationships, & to do things that excite them & bring them joy, which will help them; cope better, receive support & will reduce general anxiety & stress.
I had symptoms of this disease in my teens; viremia, couldn't wear contacts & had major cavities. On 2/1/78, at the age of 18, I went into a coma, with kidney & liver failure, being in; intensive care for a week, critical care for a week, home for two weeks, prior to being able to return back to work. I'm grateful for the doctors & staff at St. Mary's Medical Center, who saved my life. Like some other diseases, doctors believe I went into remission in my 20's & 30's, with symptoms reappearing in my 40's. I had high risk pregnancies, two children, two miscarriages & endometriosis. There were many surgeries & conditions that followed. I not only face all of the dry symptoms of this disease, but also the every day chronic pain & fatigue & numbness, all joined with other connective tissue diseases & conditions as well, some of which include; brain fog, osteoporosis, raynauds & syncope. I'm receiving botox for my migraines & acupuncture for my fibromyalgia. There are plugs in my lower eyelids for my dry eyes. I am both gluten & lactose intolerant & have been implanted with a spinal cord stimulator from nerve damage that I sustained from an automobile accident. I am very thankful to the SSF staff, who have joined & supported us at our events, in addition to working with myself & other board members, throughout the year, assisting us with the preparing & promoting of our local events. A big thank you goes out to Dr. Fred Vivino (my rheumatologist at Penn) & his wife, Virginia, as they have continued to; attend, support & volunteer with our ongoing fundraising events. Many thank you's to my own personal team of professionals, for their care & support; Rheumatologist-Penn, GI & Dentist-Temple, Neurologist-Jeff, Cardiologist, Dermatologist, Opthamologist, Primary Care, ENT, GYN & Endocrinologist, all affiliated with St. Mary's Medical Center. I can't forget our local board members, blessed for our friendships, we support each other, work together; networking, spreading public awareness & promoting fundraising events for research.
The Sjogren's Syndrome Foundation is a 501(c)(3) tax-exempt national voluntary health agency. Founded in 1983 the SSF provides patients with practical information & coping strategies that minimize the effects of Sjogren's. In addition, the Foundation is the clearing house for medical information & is the recognized national advocate for Sjogren's. The Foundation's mission is to; educate patients & their families about Sjogren's, increase public & professional awareness of Sjogren's & encourage research into new treatments & a cure.
Sjogren's Syndrome Foundation: www.sjogrens.org/
Sjogren's strikes as many as 4 million Americans (1 in 70). 90% of Sjogren's sufferers are female; the remaing 10% are men & children. Sjogren's is a chronic autoimmune disease in which white blood cells attack & damage the moisture producing glands in a person's body & the most common symptoms include dryness of the eyes, mouth & other body parts. Sjogren's can affect the entire body causing severe joint pain & dysfunction/failure of major organs such as the; liver, kidneys, gastrointestinal system, blood vessels, lungs, pancreas & the central nervous system. Sjogren's Syndrome is often undiagnosed or misdiagnosed. Because all symptoms are not always present at the same time, & because Sjogren's can involve several body systems, physicians & dentists sometimes treat each symptom individually & do not recognize that a systemic disease is present. Sjogren's often occurs alongside other conditions such as; lupus, rheumatoid arthritis & fibromyalgia. Symptoms may remain steady, worsen or go into remission. Many patients; have the dry symptoms (Sicca), not a true Sjogren's diagnosis, are retested every two years & receive the same/similar treatments as those with a true diagnosis. When it comes to food, the dry mouth of Sjogren's Syndrome is not the only thing that many have to worry about, to name a few; gerd, celiac disease, allergies & lactose intolerance. The average time from the onset of symptoms to diagnosis is 7 years. Our new break through goal is to shorten the time from the onset of symptoms to a Sjogren's diagnosis by 50% over the next 5 years. Patients need to be pro-active, by talking with their physicians & dentists about their symptoms & potential treatment options.
I am both honored & pleased, to inform you, that I was able to obtain one of the Philadelphia area's most prominent & prolific performers, "Bob Croce," & our, "Master of Ceremonies & Acoustic Guitar & Vocals Performer," for this major fundraising event. I've known Bob for several years, visiting Shady Brook Farm in Yardley, PA, when he performs as part of their Un-Wined Concert Series. With his warm & pleasant personality, he's able to get audiences to sing along. After viewing Bob's upcoming engagements, I didn't think I stood a chance, but decide to go out on a limb & contact him. He was very prompt in getting back to me, appreciated that I considered him & delighted to be able to help me out. While Bob has built his own grassroots following, he loves & performes some songs by his famous first cousin, Jim Croce. So, please take a moment & click on the links below, to learn additional information about this talented gentleman; his influences, who he's opened for, who he's shared a stage with, his awards & more!
Posted on 4/15/13: The SSF is excited to announce Venus Williams as the Honorary Chairperson of our Carroll Petrie Foundation Sjogren's Awareness Ambassador Program. Venus' courage to share her story makes her a great Awareness Ambassador and we are thrilled to have her leading the charge as our Chairperson!
Shannon Boxx, World Cup soccer player & Olympic Gold Medalist, has been an inspiring Sjogren's advocate, since she announced she has Sjogren's this past year, & connected to the Foundation by Athlete's for Hope. Shannon is now taking Sjogren's awareness to communities around the United States by stepping up as Honorary Walkabout Chairperson.
The Sjogren's Walkabout is a national awareness & fundraising event, taking place in cities all across the country. Everyone is encouraged to participate whether you come to an event to walk or to meet other fellow Sjogren's supporters & cheer on the participants. Please; mark your calendars; donate, join, support or volunteer (adults, college or high students, from 7:30 a.m. - 11:30 a.m.) for us, & enjoy a free day at the Philadelphia Zoo! Do to the need for awareness & funding, we are organizing this family fun event to help raise awareness & money for a cure. All proceeds will go directly to the Sjogren's Syndrome Foundation, the only non-profit health organization dedicated solely to Sjogren's.
9th Annual Philadelphia Tri-State Sjogren's Walkabout & Autoimmune Disease Health Fair
Learn About Sjogren's & Other Autoimmune Diseases
Sat., May 4th At The Philadelphia Zoo
Plan To Arrive Between 8:30-9:30 a.m.
The Walk Will Step Off At 10:00 a.m.
Ask The Doctors Health Questions
Dr. Mike Cirigliano, Penn & Fox 29
A Fun Day With Family & Friends
Bob Croce, MC & Performer
Face Painting & A Craft
Dr. Fred Vivino, Penn
Please help me reach my goal. Donating through this website is simple, fast & totally secure. It is also the most efficient way to support my fundraising efforts. Many thanks in advance for your support & please don't forget to forward this to anyone who you think might want to donate or volunteer! If you would prefer to send me a check, feel free to do so (made payable to the Sjogren's Syndrome Foundation). Just click the link below & I will try to reply within 24 hours.
Your help would be greatly appreciated,
a/k/a, "The Social Butterfly"
Click here to contact me with any further questions about the event, volunteering, or donating!
Sjogren's symptoms have left me with a dry sense of humor & also sucked the moisture out of me!
There is no cure, but there is hope!
In addition, I am both a victim & survivor of domestic abuse, & in 2006 went through training to become a direct service volunteer for AWP, the only domestic violence organization in Bucks County to; victims of domestic & dating violence, their children & the community.
A strong woman, is what I try to be; I feel deeply, I love fiercely, I have tears that flow just as abundantly as my laughter, I'm both soft & powerful, & I'm both practical & spiritual!
My true joy comes from helping others & making a difference, which seems to bring out the best in me!
I, "Don't Stop Believin!"