How We Fight PKD
Ending PKD in Your Family
Using IVF and PGT-M reproductive technologies, couples can end PKD in their families.
Our ambassador Tim Francis and his wife Michelle discuss having children via PGT-M
PKD-Free Alliance works with PKD-impacted families to provide support, know-how, and grants to help cover costly IVF and PGT-M (preimplantation testing) to help stop PKD in their family. We partner with fertility clinics and genetic companies to offer discounts to further offset these costs. We are dedicated to safeguarding the health of future generations, by ensuring that the babies of PKD-impacted families are born without PKD.
Together with organizations, advocates and the medical community, we are uniting to support generational health and to achieve our goal of a PKD-free future. We encourage you to join us on this important mission and help us end the heartbreak and pain of PKD.
ENDING PKD IN THE NEXT GENERATION
PKD-Free will fund pre-implantation genetic testing (PGT-M) for families to enable a new generation of children to be born without PKD.
Preimplantation genetic testing (PGT-M) is the same proven technology that is already being used to prevent BRCA, Tay-Sachs and other genetic condition from being passed down. It can also be used to end PKD in your family. The medical community is largely unaware that this solution can be used to end PKD and so PKD-Free is creating the patient activism and resources necessary to change this.
Fighting PKD with Awareness Resources and Community
PKD-Free has been actively building relationships, gathering information and identifying top medical experts, organizations and businesses that are committed to supporting families and individuals battling PKD. On this site we provide access to resources relating to the slowing of the progression of PKD through diet and wellness materials, proper care and novel treatments for individuals living with PKD, and sup[port for those requiring live kidney transplants
The most common form of PKD, autosomal dominant PKD (or ADPKD), affects in 1 in 500 people, and has a 50% chance of being passed onto your children and grandchildren. It is the second most common cause of kidney failure and needing dialysis before the age of 50. The less common form, autosomal recessive PKD (or ARPKD), is associated with even higher mortality than the ADPKD, and as such, is found in only 1 in 20,000 live-born babies (as most affected fetuses will die in utero, before birth). If both you and your partner are carriers for ARPKD, it will be passed onto 25% of your children.
Assisted reproductive technologies, namely In vitro fertilization (IVF) and pre-implantation genetic testing of embryos for known genetic conditions (PGT-M), have been used successfully since 1990 to identify embryos that do not contain a genetic mutation before the pregnancy would even occur, thus preventing propagation of the mutations to the offspring.
The combination of PGT-M and IVF will stop PKD from spreading further in the family tree. PGT-M is currently the only known way to eliminate PKD.
How it works
How it works: During the IVF process, ovaries are stimulated to mature multiple eggs which are then retrieved via a low-risk, minimally invasive procedure under sedation. The sperm is used to fertilize the eggs and create embryos, which are then cultured to the blastocyst stage of development. At this stage, an embryo biopsy is performed, and the embryos are frozen. Embryo biopsy is a process by which embryologists take a few cells from the outer part of the embryo which will give rise to the future placenta. It is not damaging to the embryos, and their implantation potential is not diminished by the biopsy. Biopsy specimens are sent to a laboratory specializing in PGT for analysis. Test results typically take 1-3 weeks. Following this, healthy embryos that do not have the disease can be transferred to the womb for a PKD-free pregnancy and a healthy live birth.
Every family has a story. You can change the ending.
Learn more about how PGT-M can end PKD in your family.
Donate Now to Support Families Fighting PKD
PKD-Free is honored to work with medical specialists, advocates and families who embrace our mission of enhancing generational health by ensuring a PKD-free future. Please consider donating to help us support families and achieve our goal.