Rare Disease Day is February 28thIT MAY BE AN “INVISIBLE ILLNESS” Yet One Major Symptom Remains Relentless Hear from Former NCAA All-American Hockey Player Who is Now a Hockey Coach

Austin Tang — Fri, 28 Feb 2025 19:00:23 +0000

Listen to “Rare Disease Day is February 28thIT MAY BE AN “INVISIBLE ILLNESS” Yet One Major Symptom Remains Relentless Hear from Former…” on Spreaker.

Primary sclerosing cholangitis (PSC) is a rare liver disease characterized by progressive inflammation and destruction of bile ducts, which may lead to fibrosis, cirrhosis, portal hypertension, specific cancers, and ultimately liver failure.1
PSC is estimated to affect 29,000 people in the United States and 236,000 people in Europe.2,3 Additionally, one in every 10,000 people worldwide is diagnosed with PSC.4 The median age at diagnosis is approximately 35 years, and approximately 70% of PSC patients have inflammatory bowel disease, principally ulcerative colitis.5,6
The cause of PSC is not completely understood but it is thought to stem from genetic as well as environmental factors. A significant symptom of PSC, 91% of patients suffer from a severe and unrelenting itch, clinically referred to as pruritus, which can deeply impact a person and their quality of life.7
As a former NCAA All-American Hockey Player, and three-time national champion with the University of Minnesota Duluth, Julianne Vasichek was at the top of her game when she was unexpectedly diagnosed with PSC. Although she had been experiencing unexplained symptoms for some time, including relentless itch, fatigue and abdominal pain, she never imagined the cause was a rare and debilitating disease.
Julianne spent the next seven years managing her disease and staying as active and healthy as possible. Due to the lack of effective treatments to manage her PSC, she underwent an emergency liver transplant. She has found that sharing her story, connecting with others, and spreading awareness bolstered her spirit and gave her a renewed sense of purpose. Drawing on her own experience, Julianne actively engages with other patients while advocating for increased research and PSC community connectivity. Julianne is thriving and is currently the Head Women’s Coach at the College of St. Scholastica in Minnesota.
There is a void of effective therapies for rare cholestatic liver diseases, such as PSC. However, with current ongoing research, there may be options in the future to combat the relentless itch that PSC patients experience other than a transplant.
Join Julianne and internationally trained hepatologist Gideon Hirschfield, FRCP, PhD, as they discuss PSC in an effort to raise awareness about the disease.

Courtesy: Mirum Pharmaceuticals, Inc

#pspartners #mirum

The post Rare Disease Day is February 28thIT MAY BE AN “INVISIBLE ILLNESS” Yet One Major Symptom Remains Relentless Hear from Former NCAA All-American Hockey Player Who is Now a Hockey Coach appeared first on Good News!.

Mommy’s Heart Fall Soiree

Austin Tang — Tue, 15 Nov 2022 17:57:26 +0000

By: Lorraine Silvetz, MSW

On Friday, October 21, 2022, global business leaders, philanthropists, socialites, and celebrities came to support Mommy’s Heart to benefit abused and neglected children and families struggling through the family court system. Mommy’s Heart is the only organization of its kind providing much needed legal and mental health services to eligible families suffering retaliation by their abusers for reporting violence.

NEW YORK, NY – OCTOBER 21: Assemblywoman Rebecca Seawright, Julianne Michelle, Charles Guria Esq. and Barbara Tate attend Mommy’s Heart Fall Soirée at Private Residence on October 21, 2022 (Photo by Michael Ostuni/PMC)

The evening included cocktails, dinner, dessert, a silent auction, and live entertainment by cellist Chris James and celebrity comedian Dan Nainan in a private Fifth Avenue residence in Manhattan’s upper east side. The event was generously catered by Amaranth Restaurant. Appetizers included lentil vinaigrette caprese salad with mixed green vegetables accompanied by thin crispy focaccia with robiola cheese from Amaranth’s brick oven. Guests were served entrées of Lobster ravioli alla vodka, mediterranean branzino filet with spinach, baby chicken poussin with mashed potato and asparagus, and veal scallopine alla provençale with jasmine rice. Alcohol for the evening was generously provided by McCabes Wine & Spirits. Guests enjoyed gift bags by Diptyque of scented notebooks, coasters, and signature fragrance.

NEW YORK, NY – OCTOBER 21: Myles von Trapp and Rianna Polin attend Mommy’s Heart Fall Soirée at Private Residence on October 21, 2022 in New York. (Photo by Michael Ostuni/PMC)

Other sponsors included Le Maison du Chocolat, Serafina, Custom Candle Company, Zitomer, Eros Flowers NYC, and Morton Williams Supermarkets. The host committee included Sean Stone, Billy Bob Thornton, Sally Kirkland, Charles Matthau, and Florence Anthony. Guests included Assemblywoman Rebecca Seawright, representing the East Side of Manhattan, former District Attorney Charles Guria, Esq., Dr. JP Farrell, and Craig Herskowitz, Esq. Board members, Michael J. Golia, Esq., Myles von Trapp, Lorraine Silvetz, MSW, Paige Bluhdorn, and Noelle Dunphy were also in attendance. Additional notable attendees included Joycelyn Engle and Joseph Di Palma, Edward Drengot Stroh, Andrew Reese, Julia Lindenthal, Eliza Williams, Miss China USA, Renee Yuting, Rianna Polin, Brett Peck, Art Hotz, Diane Poole-Chessin, Nicole J. Chessin, Esq., Dr. Robert Silvetz, Alec Andronikov, Farzana Niemann, Barbara Tate, Dr. Awadhesh Gupta, Eleanor Vale, Esq., and Chanel Korby. Photographers for the evening included Michael Ostuni/Patrick McMullan Company and Jeff Smith.

Rachel Jurist, Julianne Michelle,

Lorraine Silvetz and Farzana Niemann

Photo by Jeff Smith

Mommy’s Heart is honored to report its alliance with Assemblywoman Rebecca Seawright, who announced her endorsement of Mommy’s Heart and that she will work with the organization to create new legislation to support human rights.

NEW YORK, NY – OCTOBER 21: Myles von Trapp, Eliza Williams, Rianna Polin, Julianne Michelle, Renee Yuting, Noelle Dunphy, Dr. JP Farrell, Brett Peck and Michael J. Golia Esq. attend Mommy’s Heart Fall Soirée at Private Residence on October 21, 2022 in New York. (Photo by Michael Ostuni/PMC)

Lorraine Silvetz, MSW, Director of Mental Health Services at Mommy’s Heart and Executive Director of Global Stress Initiative under the auspices of the International Committee Against Mental Illness (ICAMI) announced, during the evening, the positive results received by a Mommy’s Heart client after a one month’s treatment for PTSD utilizing their non-invasive protocol, individualized transcranial magnetic stimulation (iTMS). This treatment, valued at over $12,000, is administered at a Global Stress Initiative clinic affiliate in Syosset, New York, five days a week, for 40 minutes each day and includes 3 EEGs or brain scans in the first month of treatment. In their experience, they’ve had 99% efficacy treating PTSD for the military, domestic violence and other survivors of trauma.

Robert and Lorraine Silvetz, Rachel

Jurist and James Manicone

Photo by Jeff Smith

“I am proud to be on the board of a nonprofit that is much needed in America today. Not only does domestic violence need to end, but the court needs to stop re-victimizing us,” said board member Noelle Dunphy.

Actress Julianne Michelle (Reeves Stroh), LMSW, founder and executive director of Mommy’s Heart, urged guests to please reach into their heart and their wallet to donate what they could afford to give to this 501(c)3 that hits close to home, as many board members suffered from domestic violence or had parents who abused or neglected a spouse or the children. “There are so many wonderful causes. However, our children here at home are in crisis, and we need to take action now. Failure is not an option. We are so grateful to Assemblywoman Rebecca Seawright and DA Charles Guria for their support and attendance. We are so grateful to all those who donated to our cause.”

The evening raised significant funds for abused and neglected children and families.

Lei Hua Chay, Julianne Michelle, Keith Jensen
Photo by: Jeff Smith

To learn more how you can help, please visit www.mommysheartfoundation.com

Mommy’s Heart, Inc.: Mommy’s Heart is a 501 (c) 3, which provides free legal representation and mental health services to fit mothers and children, who have been subjected to intimate partner violence and have been victimized by the civil rights violations of the family court system. Mommy’s Heart provides much needed resources to eligible parents, so that no parent ever has to fear losing a child to their abuser for reporting violence.

Connect @mommysheartfoundation

mommysheartinc@gmail.com

The post Mommy’s Heart Fall Soiree appeared first on Good News!.

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Rare Disease Day is February 28thIT MAY BE AN “INVISIBLE ILLNESS” Yet One Major Symptom Remains Relentless Hear from Former NCAA All-American Hockey Player Who is Now a Hockey Coach

Mommy’s Heart Fall Soiree