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THE DUCT
A Monthly Newsletter for the PSC Community
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Whether you just finished celebrating Hanukkah, are looking forward to Christmas or Kwanzaa, or are planning for the New Year,
PSC Partners Seeking a Cure wishes you and your family a
happy, healthy, and peaceful holiday season.
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PSC Partners is
Excited to Announce
PSC Specialist Map
The PSC Specialists Map is designed to help patients and their caregivers identify nearby healthcare providers and organizations experienced in managing PSC. This map incorporates clinical and scientific activity across the nation to find medical providers and organizations who see PSC patients and who may also be involved in PSC research.
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Upcoming Webinar
PSC, IBD, and the COVID-19 Vaccines
Tuesday, January 19, 2021
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Don't miss the upcoming PSC Partners Webinar, "PSC, IBD, and the COVID-19 Vaccines," Tues., Jan. 19, 6-7 p.m. MT. This timely, important webinar is free and open to all. Click here for login information.
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Have you had or suspect having COVID-19? Please complete this brief 10-minute survey to help understand the impact of COVID-19 on PSCers. If this doesn’t apply to you, please share this notice as widely as you can, so that we don’t miss anyone! Stay safe!
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WELCOME NEW PSC PARTNERS BOARD MEMBERS |
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We're excited to welcome Nicole DeSantis, Jesse Kirkpatrick, and Trish Stoltzfus to the PSC Partners Seeking a Cure Board of Directors. To learn more about these three as well as the rest of Board, click here.
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Q and A with Niall McKay
Niall McKay, host of our Living with PSC Podcast, has completed 20 episodes. We decided it was time to get to know the man who has helped our community garner a deeper understanding of PSC and other issues surrounding the disease.
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Tell us a little bit about yourself.
I grew up in Ireland. I went to America in 1997 as a journalist. I was covering Silicon Valley for Wired magazine. I then became a freelancer and worked for the New York Times, The Economist and the Irish Times in Silicon Valley. Around about 2004, I decided that I wanted to learn to make documentaries. I took an editing class at Berkeley Community College, and I met (my wife) Marissa there.
How did you get interested in media production?
My first documentary was with Marissa, and it was about the peace process in Northern Ireland. It was commissioned by PBS as part of Frontline World. We then went on to make a film called The Bass Player for Irish television, and, following that, we made three historical documentaries for PBS. Our second film, Sikhs in America, won an Emmy, so we've never looked back since.
Can you tell us a little bit about the origin of the Living with PSC Podcast?
As a journalist, I had done a lot of radio work for NPR and RTE (the Irish national broadcaster). I had also done a science column called Lab Rat where I’d interview scientists about the work that they were doing. So, when I got diagnosed with PSC in 2015, I would always ask the doctors very detailed questions about my illness. Then Marissa and I attended the PSC Partners Conference at the Cleveland Clinic. We did some short videos and interviews for the PSC Partners website. We thought why not do in depth interviews with the people who really know about the disease, the patients and the doctors?
Why is the podcast important in the search for treatments and a cure for PSC?
I think it's very difficult to always ask the correct questions when you are with a doctor or specialist. I always come home with loads of questions I think I should have asked. There's also a big difference between the cutting edge research and the treatment that one is getting from their GP (aka primary care doctor), so I think it's important that we have a podcast where I can ask the doctors the difficult questions. Also, we can find out the new research and what treatments are coming down the road. I think that PSC Partners is really good at finding these things out. It's good at funding research. It's good at communicating the treatments to PSC patients. We've got to remember that, just a few short years ago, nobody knew anything about this illness. So, I think that PSC Partners and, by extension, the Podcast are a valuable place to communicate aspects of the disease and treatment to doctors and patients alike.
If you’re comfortable, can you tell us a little bit about your PSC journey?
I got diagnosed in 2015 after a long journey of going to doctors with various complaints that I later realized were all just symptoms of PSC. I'd say that having PSC is like that awful experiment where they gradually heat a frog in water. You don't realize at first, because gradually your energy levels drop over a period of time. By 2017, I realized that I had to leave the United States, because our health care costs were astronomical. So, I came home to Ireland with Marissa, and I have been receiving good treatment under the socialized medical programs here.
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How does your caregiver (Marissa) factor into the journey?
Marissa and I are not just husband and wife. We work together too. So, Marissa is very much in my journey. The best thing a caregiver can do for the patient is to let the the patient be sick. That sounds very simple, but Marissa does not ask me to mend fences or chop wood when I am not feeling well. She allows me to rest.
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Anything else?
I am very grateful for PSC Partners. One of the worst things about the illness is how alone you feel. Doctors have become a great deal more aware of the illness in the past five years, but, before then, they'd look at you like you had just told them that your aura was a little off when you said that you had PSC. I think that the work that PSC Partners is doing is invaluable.
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BIG THANK YOU TO OUR SUPPORTERS
PSC Partners had so much community support that our Making Our Voices Heard: Patient-Focused Drug Development Forum was completely financially supported by our dedicated community members. Huge thank you to those supporters! If you missed this amazing meeting or would like to re-visit a section or two, view recordings here.
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PSC Partners ZoomRooms are a great way to connect with others in the PSC community. This ZoomRoom is for PSC patients 18 years-of-age and older. Anyone who has joined one of the past ZoomRooms can tell you they are interesting, fun, and a great way to spend an hour of your time. Join us!
After registering, you will receive a confirmation email containing information about joining the meeting.
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Happy Holidays From All Of Us At
PSC Partners Seeking a Cure
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Donor Advised Funds
A donor advised fund (DAF) is a type of giving program administered by a third party that provides you with the flexibility and most favorable tax benefits to easily support your favorite charities. DAFs are designed to manage charitable donations on behalf of an organization, family or individual and are becoming increasingly popular. They are an excellent way to simplify your charitable giving and facilitate your strategic philanthropic goals. You will receive a tax deduction when you make a contribution of cash, stock and other assets to your donor advised fund and, at a later time, you can grant specified amounts to the charities of your choice.
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Legacy and
Planned Giving
Consider leaving a legacy in the search for a cure. A legacy gift shows your belief in the mission of PSC Partners and your desire to accomplish something special in the lives of those battling PSC. You can designate PSC Partners as a beneficiary in your will, trust or estate plan.
Your planned gift can be made by naming PSC Partners Seeking a Cure as a beneficiary in your will, retirement plan, or life insurance policy. Your professional advisor can help you explore the possibilities and identify ways to maximize the financial and tax benefits of an estate gift.
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Utilize the Coronavirus Aid, Relief and Economic Security Act
(CARES Act)
The CARES Act provides significant tax relief and charitable giving benefits of both small and large gifts donated by December 31, 2020.
New charitable tax benefits include:
•100% deduction for cash gifts to public charities. Individuals may now deduct up to 100% of their gross income for cash (or check) donations; significantly increasing the benefit to the donor.
•Five-year carryover for larger gifts that exceed the gross income/taxable income limits have a five-year carryover; with limits reverting to the previous limits in 2021 and later years.
•New charitable deduction for non-itemizers. Even if you don't itemize for 2020, you may still claim a deduction from gross income for up to $300 in cash donations to a public charity. This reduces adjusted gross income and is on top of the standard deduction.
•Other tax benefits may apply to you. For more information, please contact your tax advisor.
There is just a week left for your gift to be tax deductible in 2020. This is your last chance this year to help find a cure and better treatments for primary sclerosing cholangitis patients.
Any amount will bring us one step closer to a cure.
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MASK-ERADE A SMASHING SUCCESS! |
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Thank you to everyone who participated in the Mask-erade fundraiser. At this time, we are sold out. We were overwhelmed by the success of this endeavor, and we know awareness of PSC Partners will be increased by folks proudly wearing their masks.
(Special thank you to our Mask-erade poster boy Emmett!)
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Our Mission: To provide education and support to PSC patients, families and caregivers and raise funds to research causes, treatments and cures for primary sclerosing cholangitis (PSC). |
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6900 E. Belleview Ave., Ste 202,
Greenwood Village, CO 80111
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