All posts by Kara

29Aug/14

Pulmonary Fibrosis Symposium

unnamed

Date
September 5-6, 2014

Location
The Martin Center
960 Heritage Way
Brentwood, Tennessee 37027

Time
8:30 a.m.-3:30 p.m. each day

 

Friday, September 5, 2014

8:00                Registration Opens / Coffee / Welcome

8:30                Pulmonary Fibrosis, presented by Dr. Lisa Lancaster

9:30                Connective Tissue and Pulmonary Fibrosis, presented by Dr. Leslie Crofford

15 min break

10:45               Genetics and Pulmonary Fibrosis, presented by Dr. Jonathon Kropski and Cheryl Markin

11:45                Palliative Care, presented by Sara Martin

12:15-1pm       Lunch

1pm                 Lung Transplantation, presented by Dr. Mark Steele

2pm                 Personal Experiences by Transplant Recipient, Sally Clinard

3pm                 Dismiss Group

 

Saturday, September 6, 2014

8:00                Coffee / Welcome

8:30                Douglas Herr, Patient group discussion & Michele Peters, PFF Ambassador, Caregiver group discussion

9:30                Pulmonary Rehabilitation, presented by Jeremy McNatt

15 min break

10:45               Research Review, presented by Wendi Mason, NP

11:45                PFF Ambassadors, Jeffery & Michele Peters, share their stories

12:15-1pm       Lunch

1pm                 Pulmonary Function Testing, presented by Dr. James Sheller and Phyllis Leonard, RRT

2pm                 Oxygen Therapy, presented by Sarah Roberts from Apria and Sandi Brim from Medical Necessities

 

3pm                 Dismiss Group

Click here to register.

08Aug/14

Help Researchers Learn More About PF!

The Pulmonary Fibrosis Foundation is looking for patients and caregivers to participate in a survey.

Pulmonary fibrosis drug research and development is at a defining moment with two new therapies having achieved FDA breakthrough therapy designation. If you are living with PF, or if you are a caregiver, your voice through this survey will reach decision makers in Washington, DC and will inform health care professionals around the globe.”

You can participate by taking the survey here.

07Aug/14

Team Sjogren’s Half Marathon & 10k

I received an email a few days ago from the Sjogren’s Syndrome Foundation and wanted to help spread the word. Here’s the details from the email:

Join Team Sjögren’s as we head to the most magical race on earth!

Come walk or run with us at the Walt Disney World® Marathon,
Half-Marathon & 10K weekend on January 9-11, 2015!
The Walt Disney World course will take you through Walt Disney World Theme Parks including Epcot and the Magic Kingdom before you finish a picture worthy finish back at Epcot, where you’ll receive your Mickey Mouse finisher medal!

As a team member, you will receive world-class training along with mentorship from past runners and foundation staff. Our team trainer and nutritionist will be there to help guide you and ensure you’re ready to complete the 6.2 or 13.1 miles. If you’re unable to run or walk in a race, consider recruiting someone you know to run or walk in your honor.

To learn more, we have scheduled two information calls where you will hear from past Team Sjögren’s members, SSF staff and our team trainer.
We hope you will join one of our calls:
Tuesday, August 19th at 12 PM EST

Tuesday, August 19th at 8 PM EST

To RSVP for a call and to receive our conference call number,
please contact Caroline Mullin at cmullin@sjogrens.org.
Due to the popularity of the Walt Disney World® Half-Marathon & 10K, we have limited spaces available so sign up soon.

If you can’t join an informational call but want to receive more information about training and fundraising requirements, please contact Steve Taylor at (301) 530-4420, x211 or staylor@sjogrens.org.

Imagine the feeling when you cross the finish line
at the most magical place on earth!

23Jul/14

World Sjogren’s Day

Today is World Sjogren’s Day.

I’m not a doctor, so it’s hard for me to explain this little know auto-immune disease to people when they ask about it. What I usually say is, “Well, it’s sort of like Lupus, but it targets parts of your body that make moisture.” And that’s an extreme over-simplification, but it gets the general idea across.

The Sjogren’s Syndrome Foundation gives a slightly more scientific explanation without getting too technical:

“Sjögren’s is a chronic autoimmune disease in which people’s white blood cells attack their moisture-producing glands.”

The SSF estimates there are currently four million Americans with Sjogren’s. My mom is just one of those people. Like IPF, there is no cure for Sjogren’s and the general treatment plan consists of throwing various drugs, ointments, and drops at the symptoms. For people with severe cases or who have organ involvement, doctor’s will often prescribe immunosuppressants.

Mom was given Imuran last summer, but that ended after two hospitalizations.

Please consider making a donation to SSF.

17Jul/14

Right in the FEELS

The GoFundMe fundraiser for mom went live about 24 hours ago. Mom and I had a lot of mixed feelings about the idea of fundraising. It’s not easy to ask for help. And, perhaps even more so, asking for help for my solidly middle-class parents.

In September of last year my mom reached the point where she was too sick to continue working. She applied for Social Security soon after, but wouldn’t receive her first payment until March of this year. My dad is a commission salesman and only gets paid once a month.

They have some savings set aside but chronic illness in a now single income family adds up. Quickly. Even with insurance.

My mother said this today on Facebook:

“It is quite a blow to lose your income. Disability payment doesn’t even come close at a time when ill people have more expenses than ever.”

What little money they have set aside will be gone quickly, and though I know my father would drain his retirement account and never regret it, he’s going to need something to live off of after she’s gone. My parents should be enjoying what is likely their last few years together, not worrying about how to pay their bills.

When I setup the fundraiser I knew it was something I needed to do to keep my parents from being swallowed by medical debt in the coming years as my mother’s illness progresses. What I didn’t anticipate was how it would feel to see those first few donations come in. I cried.

These people care enough about me, my mom, and my family to give their hard-earned money away, and “thank you” just doesn’t seem adequate.

I don’t know that there are words in existence to explain our gratitude.