Support the Fontan Blood Pump
Unfortunately, surgery is not a cure. An estimated half of all children who survive the Fontan operation will have heart failure by adulthood and all Fontan patients are expected to eventually fail at some point in their lifetime. The only treatment option for these patients is a heart transplant. Heart transplants are lifesaving, but exchange one set of complications for another set. They are incredibly risky, require intense medical management, and require patients to live in a weakened immune state due to the required anti-rejection medications.
There needs to be another treatment option for patients born with a single ventricle heart defect. For the last 15 years, Dr. Mark Rodefeld, a pediatric heart surgeon at Riley Children’s Hospital in Indianapolis, IN, has been working to develop a Fontan blood pump. His research aims to place a small pump in the hearts of Fontan patients to emulate a normal two ventricle circulation, halt the progression of Fontan disease, and reduce the need for heart transplant.
Dr. Rodefeld’s research has in the past been supported by two National Institutes of Health (NIH) grants, the Children’s Heart Foundation, and private philanthropic donors. However, there are many times in a researcher’s career when they are faced with funding gaps. This is one of those times for Dr. Rodefeld, which is why we are turning to you to help move this promising research forward. Dr. Rodefeld has assembled a team of engineers and medical device manufacturers to design and prototype this device. There is only one barrier holding back his prototype from being made – funding.
Any contribution will help make this potentially life-saving concept a reality!
WHERE THE FUNDING WILL GO...
1. Fund a website to promote the Fontan blood pump, a potentially groundbreaking medical breakthrough for single ventricle patients. $1,500-2,500.
2. Fund a documentary to explain Dr. Rodefeld’s research and to tell the story on why this could be so important to thousands of single ventricle patients. $7,000.
3. Contribute to Fontan blood pump development through the Cavopulmonary Assist for Single Ventricle Heart Disease Research Fund at IU Foundation. Prototype completion $350,000.
This campaign is an independent initiative led by a group of patients and families affected by single ventricle and congenital heart disease who wish to support advancing cures for single ventricle heart disease and Fontan failure. Please direct any inquires to firstname.lastname@example.org.
Dr. Rodefeld recently provided us with a update as to the progress of the Fontan Blood Pump prototype -
"The fourth generation prototype fabrication is underway. The estimated time to completion is 5-6 months, but I would guess that there will be some time creep. However, it is a concise fabrication schedule. Cost is estimated to be north of $350K - extremely expensive, but it is a highly advanced design and I feel confident it will function fully."
We have been blown away by the response and support. I just moved the goal to $100K and I am confident we can reach it! In the month of March alone we raised over $21,000.
Also, I hope you all have all had a chance to check out the new website with in-depth informaiton on the research at FontanBloodPump.com.
Dr. Rodefeld, myself, and the rest of the team are sincerely grateful for the outpouring of generosity. Thank you everyone for stepping up and pitching in!
Just over a month ago, we embarked on a journey to provide hope for a brighter future for Fontan patients. Since then we've have raised more than $16,000 from nearly 150 donors. In addition to the funds, we’ve raised awareness around the world of this potentially life-saving device. The GoFundMe site has been viewed over 30,000 times from all over the world! This awareness is critical and just as important as the funds. These efforts couldn’t be possible without the dozens of volunteers who have helped promote campaign. Thank you to each of you who have shared your stories, helped with blog writing or website content, or just shared the GoFundMe link.
And we’re really just getting started. We’ve started work on FontanBloodPump.com and we’ve already gotten a a first draft back form a design firm. We are now putting the finishing touches on it and creating the content. We are hoping to launch mid-January. We are also planning on launching Phase 2 of our fundraising campaign at that time. Please keep yourself posted for more details.
I’ve also been asked by some supporters about my relationship to Dr. Rodefeld and my connection to single ventricle heart disease. I first met Dr. Rodefeld over two years ago in Indianapolis and since then have been volunteering to help him promote his research. As a Fontan patient myself, I understand the importance of making this device a reality. Dr. Rodefeld has since become a close friend and I have communicated with him regularly throughout this campaign. As for the funds we’ve raised so far, I am going to withdraw them myself for the purposes we outlined in the campaign description. We are going to pay for the website which came in under budget at $1,000. We are going to set aside funds for the documentary and the remainder of the funds will be sent by check to the Indiana University Foundation, which has set up a specific fund for Dr. Rodefeld’s research.
Thank you again to all our our donors and volunteers! Happy Holidays!
Check out their organization's Facebook page. They are doing great work funding research fellows, providing pillows to post-surgery CHD patients, and raising awareness of CHD.
Dr. Rodefeld has done my son's first open heart surgery. He was born with half of a heart. He is an absolute angel. This is a goal he has worked on for a very long time! Please share and support this. My son, Abel, could have such a greater chance of a long and healthy life if we can get this off the ground and going! As well as many other sweet darlings who were born with CHD, HPLH Syndrome, and babies who are shunt dependant. Please, please, please share!!!! ❤
God bless all of you for this campaign. It is amazing how CHD patients go unnoticed compared to cancer patients. I think it is because one cannot see the effects of CHD, unless the person removes their shirt and you see the scar from open heart surgery.....and other surgeries. My son is now 26, he is single ventricle and has had an extra cardiac fontan and pacemaker. ( he had his first open heart surgery at 2, second at 22). I pray that the heart pump will become a reality. Thank you.