Polycystic Kidney Disease

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Polycystic Kidney Disease (PKD) is one of the most widespread yet underfunded genetic disorders in Canada. PKD affects approximately one in every 500 Canadians; more than Down’s syndrome, cystic fibrosis, muscular dystrophy, and sickle cell anemia combined. PKD is one of the most prevalent genetic diseases; it affects four times more than Turner Syndrome (1/2000 individuals) and thirty times more than Prader-Willi Syndrome (1/15,000 individuals). However, PKD receives little funding or media attention, leaving many of those living with the disorder struggling to find support.
The Polycytic Kidney Disease Foundation of Canada (PKDFOC) is the first and only national Canadian charitable organization dedicated solely to improving the lives of PKD patients.  Through providing dedicated funds to research, community initiatives, and educational programs, the PKDFOC aims to improve the lives of all those affected by this disease.

What is PKD?

Polycystic Kidney Disease (PKD) is a genetic disorder in which a large number of cysts develop within the kidneys, causing the organs to greatly increase in size and weight. Cyst sizes range from that of a penny to a grapefruit. The cysts can sometimes involve other nearby vital organs, causing the patient further pain and threatening to alter the body’s necessary functions.

Two major types of PKD exist: Autosomal Dominant Polycystic Kidney Disease (ADPKD), which is caused by a single ADPKD-gene mutation passed from an affected parent to his/her child; and Autosomal Recessive Polycystic Kidney Disease(ARPKD), in which each parent of an affected child carries one ARPKD gene mutation but are asymptomatic ‘carriers’ themselves.  However, when both mutations are passed to the child, he / she will be affected.  ARPKD is quite rare, occurring in one out of 20,000 people, and often causes mortality within the first month of life.

Both forms of PKD can affect people of every race, gender, or age.

The severity of ADPKD symptoms varies in each diagnosis. Some patients experience very few or mild symptoms; many do not realize they have the disease until later in life. However, others experience extreme chronic pain, hypertension, increased likelihood of kidney stones, and hematuria (blood in the urine). PKD can also lead to several other medical complications such as liver cysts, hernias, and intracranial aneurysms.

By age 50, more than half of the patients with ADPKD will reach end-stage kidney failure, requiring either dialysis or transplantation to prolong the quality of their life.
There is currently no treatment or cure for PKD. Yet, with the help of the PKDFOC, tremendous medical breakthroughs have been made in recent years. Since 1999, the PKDFOC has funded medical researchers with over $300,000 to study and develop new treatments for PKD.

The PKDFOC has provided grants to several institutions over the years, including a $25,000 grant to Dr. York Pei of Toronto General Hospital in 2010, two grants totaling $89,400 in 2011 and 2012 to Dr. Marie Trudel of the Clinical Research Institute of Montreal, and a $35,000 grant in 2013 to Dr. Moumita Barau of Toronto General Hospital.

In 2013, the PKDFOC dedicated 30% of total budget (representing about $35,000) – the largest allocation within its annual budget – directly to a PKD Fellowship Grant. Sixty-six percent of their total went to fundraising initiatives, public education, and foundation growth.

The PKDFOC believes in transparent business practices. All financial and operational information, along with additional information on PKD treatment and research can be found at www.endpkd.ca.

National Support on a Local Level

The Polycystic Kidney Disease Foundation of Canada (PKDFOC) operates under the mandate to “promote programs of research, advocacy, education, support and awareness in order to discover treatments and a cure for polycystic kidney disease and improve the lives of all it affects.” This mission has carried with the PKDFOC since its inception.

The PKDFOC began in a private home in Oakville, Ontario in 1994 with only four inspired activists in attendance. Through dedication and a true desire to make a difference in the lives of individuals and families affected by PKD, these activists started the ‘PKD Research Society of Canada,’ a provincial not-for-profit. In 2009, after over a decade of success and growth, the organization was rebranded as the PKD Foundation of Canada and became a national not-for-profit with hundreds of active volunteers and community members.

The PKDFOC is organized as a series of chapters located across Canada. These chapters are led by a volunteer coordinator who facilitates bi-monthly member meetings and local fundraising initiatives.

Jeff Robertson, Executive Director is the national public voice for the organization. Robertson, whose mother and grandmother both live with PKD, acts as the ‘backbone’ of the PKDFOC, supporting each local chapter and ensuring that the charity gains continual support.

“The greatest part of the PKDFOC is its ability to create a supportive community for those affected. Patients can connect with individuals who share their experiences. They connect and support each other on a personal level,” Robertson explains.

The PKDFOC currently consists of six chapters: (1) Toronto, Ontario; (2) Ottawa, Ontario; (3) Hamilton, Ontario; (4) Vancouver, British Columbia; (5) Corner Brook, Newfoundland, and (6) Montreal, Quebec. The Foundation also runs an ARPKD specific online support system. Those seeking more information on chapter initiatives, or who are looking to get involved, are encouraged to call the PKDFOC’s national toll-free hotline (1-877-410-1741).

Fundraising

The PKDFOC and its programs have received an ever-increasing amount of support over the years. Much of this support stems from increased awareness of the disease and its symptoms.

In 2013, the PKDFOC gained exposure through a variety of different media outlets, including newspapers such as the Toronto Sun, Belleville Intelligencer, and Kingston Herald; Rogers’s daytime television programs; and awareness booths at public events such as the Re/Max Spring Home & Garden Show, the Re/Max Fall Home & Décor Show, and the Burlington Lifestyle Home Show.

Most of the PKDFOC’s fundraising and awareness initiatives are organized and led by volunteers. Involvement opportunities and impact range from a local to national level.

There are many communities still in need of leading activists to establish strong chapters.

Volunteers across Canada cherish the work they do to help end PKD. Guelph Walk for PKD Co-ordinator Carrie Manson explains in a personal testimonial:

“It is an honour to be involved with an organization that has such a passionate, dedicated and understanding leadership team. Just to think about the awareness we have created in such a short period of time is humbling.”

The PKDFOC’s annual Walk for PKD campaign is the organization’s largest and most significant fundraising event. Each year, hundreds of individuals impacted by the effects of

PKD join together in a show of unity and support. Walks are organized by the PKDFOC’s local chapters and held in communities across Canada.

Since the Walk for PKD’s inception in 2001, the event has raised more than $524,000 for PKD treatment and research studies. Funds are also used to provide educational and support services both online and within local communities. The 2013 Walk was the PKDFOC’s most successful campaign yet, raising over $173,000.

Currently, three Walks for PKD events are taking place in Guelph, Vankleek Hill (Ottawa/Montreal area) and Toronto, with more planned for the future. All those interested are encouraged to register on the PKDFOC’s website (www.endpkd.ca/walkforpkd). Further information on upcoming Walk for PKD events can be found in the article footnotes.

2014 also holds a memorial landmark for the PKDFOC. On Saturday, November 22, 2014, the PKDFOC will be hosting its first Inaugural Canadian PKD Symposium at the Hilton Toronto Airport Hotel & Suites. Members of the public are invited to attend and meet with members of the PKD medical community, patients, and affected families.

“This event will allow all members of the PKD community to come together, learn about polycystic kidney disease and connect with their peers,” says the PKDFOC’s Executive Director Jeff Robertson.

This event is free to all attendees; registration remains open until October 17, 2014. More information on this symposium can be found at

www.endpkd.ca.

Through supporting the PKDFOC, Canadians can help ensure no one suffers the full effects of PKD.

To learn more about the PKDFOC and its educational and support initiatives, please visit www.endpkd.ca.

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