IPF Catalyst Challenge Offers $1 Million Prize to Help Patients

Kim Fredrickson avatar

by Kim Fredrickson |

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IPF Catalyst

Just breathe, passionate help for the PF journey
I recently learned of a competition for innovators and entrepreneurs in the tech, healthcare, and scientific research communities to help those living with pulmonary fibrosis. It’s called the $1 million IPF Catalyst Challenge and it is awarding a million-dollar prize for quality-of-life solutions to help patients and caregivers ease the burden of our disease.

Ken Bahk PhD, managing director of Three Lakes Partners, stated in a press release, “IPF kills approximately the same number of people annually as breast cancer, yet it remains an unknown disease that receives very little attention. Our mission is on behalf of patients and caregivers: to increase visibility of this disease and to attack IPF from all sides — diagnosis, treatment, and patient quality of life — all by engaging the most innovative, aggressive, and experienced partners in our collective fight. We are excited and grateful to work with our world class collaborators MATTER, IDEO, and Common Pool in this first step, the IPF Catalyst Challenge.”

Isn’t that amazing? It seems like a dream come true that the people at these four companies are taking their time and hard-earned money to help us!

These companies have come together to find solutions to help patients and caregivers in the areas of:

Early diagnosis and detection: Diagnosis is difficult, and takes an average of 26 months from the first appearance of symptoms to confirm that a patient has IPF. Patients often are diagnosed years too late to start medications that can slow the progression of the disease.

Patient education and engagement: After diagnosis, patients often have to hunt for information online. We need practical and direct information about IPF, which will help us be better informed and advocate for ourselves.

Oxygen improvement: Patients struggle and fight to obtain supplemental oxygen and inform their doctors how they are doing. We need new ways to send our doctors real time information about our health, so they can be more responsive to our needs.

Improving the care continuum: Patients and caregivers have to find their own solutions to get the help they need and increase their quality of life. We need innovators and researchers to come up with education, devices and solutions to live out their final years, and FIND A CURE!

Join me on a Facebook live video

On Thursday, Aug. 17, there will be a live webinar to explain more about this contest. You can be a part of it by visiting the PF Warrior Facebook Page at 10 a.m. PT/noon CT.

This will be a Facebook live event where you will be able to ask questions and make comments. Two patients, myself and my friend, Bill Vick, will discuss the challenges of living a full life as oxygen users and PF patients. We hope to spur inventors, entrepreneurs, and small businesses to create apps, products or services to help patients and caregivers ease the burden of their disease.

We will be joined by two professionals, Kathy Lindell, PhD, RN, a leading clinical nurse specialist from the University of Pittsburgh/Sammons Center, specializing in treatment of IPF, and Elizabeth Estes, who is a partner at Three Lakes Partners.

We will all discuss the problems we face, ask about solutions and cover details of the $1 million IPF Catalyst Challenge to help people with pulmonary fibrosis. One million dollars will be awarded to those who come up with the long-term solutions to improve the lives of those with PF. The challenge has begun and is accepting registrations through Oct. 25.

I would love to have you join me! I would appreciate your supportI. (I’m a little nervous.) I also think it would be amazing to have as many PF patients as possible express our gratitude to Three Lakes Partners, MATTER, IDEO, and Common Pool for holding this challenge to help all of us and our loved ones who suffer with this disease.

Learn more about the $1 Million IPF Catalyst Challenge and take your shot earning $1 million dollars. This is an amazing website, and has wonderful information to learn more.

I would love to hear from you. What stood out to you in this column? What problems regarding diagnosis, oxygen use, patient education, and quality-of-life issues do you want these innovators and entrepreneurs to tackle?

Please share this column on your Facebook page or other social media platform. You never know what bright mind will have a life-changing idea!

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Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.

Comments

Mary Lasowski avatar

Mary Lasowski

This is good news, but not sure if I will be home by noon. This site has been very helpful for information and support.
Thank you Three Lakes Partners, MATTER, IDEO, and Common Pool for helping us. I will try to think of something to help.

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Mary Lasowski avatar

Mary Lasowski

This is good news, but not sure if I will be home by noon. This site has been very helpful for information and support.
Thank you Three Lakes Partners, MATTER, IDEO, and Common Pool for helping us. I will try to think of something to help.
One thing I remember is the dr said I had uip and I asked him to write it down so I could show to my son. So he did usual interstitial pneumonia. So the next step is to see the pulmonary dr. I wish they would have explained what I had more throughly. If you look it up on internet you have 3 to 5 yrs.
I was lucky that I went to a COE and the pulmonary dr did tests etc. explained the disease, and put me on Ofev and weaned off prednisone. I started Ofev Jan. 2015, was on oxygen with activities and on Sept.1 2016 I was taken off oxygen and my tests have been staying the same. Thank God.
The drug does give me diarrhea at times, but Imodium helps. I can suffer through that to slow this down. I do rehab 2 x a week exercise at home and feel well.
I was also fortunate in getting a lung biopsy in Oct. 2015 and had one one the best pathologist read it, God works wonders!
Good luck in your ventures and thank you!

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Kim Fredrickson avatar

Kim Fredrickson

Hi Mary, so glad that your treatment is keeping you stable, and that you are in such good care. Many blessings to you...

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Karen Charity avatar

Karen Charity

God is Awesome. Bless you. Hope you continue to progress

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JAMES MASTERS avatar

JAMES MASTERS

I have given Civic Presentations for the last 3 yrs,on Lung Disease & PF-IPF&UIP. I have always included the need for early diagnoses & detection .I have always felt that more could be accomplished if PFT , Spirometry testing would be given once early symptoms are detected .Early preventative testing is presently given in area of Managrams for Breast malignansy ;Colonscopy for Cancer prevention ; & preventative testing exists to detect Heart problems . So why not PFT/Spirometry testing to detect Lung Issues which are the 3rd leading killer in the U.S.? I also included the need for the development of more effucient O2 Systems having modern software to alert Pulmonologist & patient of problems of supply &/or patients deteriating condition.There doesn't seem to be much improvement in this area over the last 5 to 6 yrs. There most be more done in the standardation area of the type of PFT equipment utilized, testing & testing procedures info obtained to decrease the present approx. 2 yrs.for a patient to be diagnosed as having PF/IPF .THE TIME HAS COME - WE CAN NOT ACCEPT THINGS AS THEY ARE NOW.ALL WE WANT TO DO IS BREATHE WITHOUT PROBLEMS 24/7 , TO BE NORMAL AGAIN .

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Kim Fredrickson avatar

Kim Fredrickson

James...excellent points! Totally agree...

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Jim Hushaw avatar

Jim Hushaw

Interesting to read the average 26 month diagnosis statement. In my case I became overly tired while moving and my GP, after seeing X-rays called it congestive heart failure. My cardiologist followed up and I received a aortic valve replacement because he had told me "if you live long enough you will have to have the aortic valve replacement surgery." Had the surgery and made a rapid recovery and resumed golfing three times a week three months later as well as exercising at the gym two or three times a week. All looked great until six months after surgery in Jan. of 2014. My energy level dropped and new X-rays showed the same lung spots used to make the congestive heart failure call. My cardiologist consulted with my heart doctor and he performed a lung biopsy. It confirmed my IPF with examinations and a biopsy through Stanford University. Oddly, I had been on amimoderone for about 6 years for my arythima but had stopped it about two years before the heart surgery. We were told that if my PF was caused by that, there might be a possible cure. The Stanford study was inconclusive and a follow up rhuematoid test showed that was not my problem. After consulting a local pulmanologist I was sent to the University of California, San Francisco lung center and after two sessions over a one year period was giving minimal information. Since 2015 I have been on mycophenalate (4000 mg a day) and a recent chest X-ray indicated that there was no significant change in my lungs. My pulmanologist suggest no other treatment from drugs I have been reading about. Any others using mycophenalate?

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Kim Fredrickson avatar

Kim Fredrickson

Hi Jim, thanks so much for sharing your PF journey. You have been through so much! I go to UCSF as well, and am on mycophenalate (2000 mg a day). Good news that you are stable. Best Wishes to you

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