FAv Foundation Inc.

at 3045 Saskatchewan Drive, Regina , S4T 1H5 Canada

1. Non-Profit Organization
2. Non-profit organization

FAv Foundation fights for people like, Vonn who suffer from the very rare genetic disease, Fanconi Anemia. FAv (Fanconi Anemia Vonn) is also passionate about www.onematch.ca - Canada's Stem Cell Registry Find out more about FAv at www.favfoundation.ca FAv Foundation is a Registered Regina Charity that raises money for Fanconi Anemia Research and raises awareness about the One Match Registry – Canada’s Bone Marrow/Stem Cell Registry. FAv fights in honour of our Fanconi Anemia fighter, Vonn Chorneyko. Vonn has a very rare, life threatening genetic disease called Fanconi Anemia. FA leads to bone marrow failure, leukemia and other types of cancers – this disease is so rare that he is the only person with FA in Saskatchewan. Families affected by this rare disease feel compelled to fundraise, fight and race against the clock to find a cure for this devastating disease. Currently Vonn is in “bone marrow failure”, however currently he is stable and is a happy, active, 8 year old boy. In the near future Vonn will need to undergo a bone marrow/stem cell transplant, his best chances of survival is to find the “best” stem cell match out there. FAv Foundation along with Vonn’s parents are passionate about raising awareness about One Match; they are hopeful that their son will find a perfect match when it comes time for his transplant. For more information please visit: www.fanconi.org - www.onematch.ca

Description

With the permission of Vonn’s parents – Colin and Ashley Chorneyko … we’d like to share with you – “The Story of Vonn”. Vonn Chorneyko was born on September 14, 2009. A bouncing baby boy with normal development and considered healthy by all accounts. In January of 2015, Vonn developed an infected lymph node that required a short hospital stay and a minor surgical procedure. It was during this hospital stay that Vonn had his blood work checked for the first time. It showed “slightly irregular” and required follow up. Doctors felt certain that the blood work irregularity was likely due to the infection and all would return to normal. In March of 2015 follow up blood work was done and again his blood levels were still “off” – but not alarming. At this point Vonn was referred to a Pediatrician for ongoing care. Follow up was done again in June; Vonn’s blood still showed irregularities and doctors were becoming concerned in regards to his low red blood cells, white blood cells and platelets counts. They determined that his levels could no longer be attributed to the original infection. Vonn was then referred to a Hematologist who began a series of blood tests every 2 weeks in an effort to create a blood history and determine what was wrong with this small child. As the weeks dragged on Colin and Ashley fought to see a Pediatric Hematologist in Saskatoon and to have a bone marrow biopsy done on their son. They were getting desperate for answers and on August 5 a biopsy was done. The results of the bone marrow biopsy were not conclusive. With frustration they fought for the next step – the family believed that doctors were suspecting a bone marrow failure disorder of some kind but never could have imagined that their son had Fanconi Anemia. The next test, called a Chromosome Breakage Test was sent off to Calgary and unfortunately tested positive for Fanconi Anemia. On October 1, 2015 Colin and Ashley were delivered the life changing news that young Vonn had been diagnosed with Fanconi Anemia. Further genetic testing would later confirm Vonn’s diagnoses. Vonn was born with Fanconi Anemia; however it did not become evident until he began to suffer from bone marrow failure. Currently Vonn is the only person in Saskatchewan with Fanconi Anemia (FA). Looking back Ashley (Vonn’s mom) says there have never really been any signs or symptoms of FA or any other health issues with Vonn. She says that he has always been on the small side and otherwise is a completely perfect and healthy child. Colin and Ashley consider Vonn extremely fortunate; he has no birth defects or physical anomalies. The Chorneyko’s received an overwhelming amount of bad news in the first few months, however they remain hopeful and optimist for Vonn’s future. They are thankful for many things; thankful genetics was able to find his mutation, FANCA, thankful that they have time to find him the best bone marrow match possible, thankful that Vonn’s lymph node infection led to his early diagnosis, thankful for all of the advances in FA treatment, and lastly extremely thankful that Vonn was able to spend the first 5 ½ years of his life being raised as a “healthy child” and living a normal life. With this genetic information and with early detection Vonn will be properly monitored and screened for Leukemia and other forms of cancer throughout his life. What is Vonn’s prognosis – well nobody really knows… but FA doctors are hopeful that Vonn can hold on for as long as possible before inevitably needing to undergo a bone marrow transplant. Currently Vonn is monitored monthly with CBC blood work exams and is currently stable and doing quite well. Being the only FA patient in Saskatchewan and with no Children’s Hospital at this time - Ashley and Colin are investigating options for a transplant centre, which will require a 4-5 month family relocation for Vonn’s treatment when a bone marrow transplant becomes necessary – Toronto Sick Kids Hospital and Minneapolis Children's Hospital are being considered. The Chorneyko’s are making the most of their current family situation, living day by day. Vonn continues to be living a “normal” life and spends his time playing, going to school and enjoying his latest passion – Skiing!! Vonn’s little sister Bay (who has been checked and thankfully does NOT have FA) was tested to determine if she may be a bone marrow match/donor for Vonn and sadly she was NOT. Colin and Ashley continue to advocate for all healthy Canadians between the ages of 17-35 to consider registering themselves with One Match – which is the Stem Cell Registry with Canadian Blood Services. www.blood.ca/en/stem-cells… Along with FAv Foundation Inc. Ashley has formed a working committee of amazing Regina women who are as committed as Ashley to raising funds for FA research and finding a cure for this devastating disease. This year's FAv Gala (Fanconi Anemia Vonn) will be held on Friday, April 20th, 2018. Plans are well underway for this event and we look forward to sharing all of the details with our FB community over the coming weeks. Stay tuned for further updates on Vonn, information on FA as well as details on our upcoming FAv Gala!!

General Info

FAv Foundation along with Vonn’s parents are passionate about raising awareness for One Match; they are hopeful that their son will find a match when it comes time for his transplant! INTERESTED in hosting a One Match Drive? In order to host a One Match Drive all we need is two long tables, but more importantly: 1. an audience who is between the ages of 17-35 2. who are in general good health 3. who are willing to help anyone! 4. and who have a Canadian, Provincial Health card (they do not have to have with them at time of swabbing) Please contact FAv Foundation or Ashley aka Vonn's mom at ashley@munrohomes.com if you are interested in hosting a One Match Stem Cell Drive. One Match is a division of Canadian Blood Services, however there are different rules and stipulations for donating blood than for joining the stem cell registry. In order to sign up and join the registry a general health questionnaire must be filled out and 4 cheek swabs need to be completed by the registrant. The process takes about 10 minutes! There is a less than 1% chance that a registrant would ever be called as a “match”, which is why it is so important to have as many people on the registry as possible, since finding a match is very rare. For more information please visit – www.onematch.ca

Company Rating

65 Facebook users were in FAv Foundation Inc.. It's a 15 position in Popularity Rating for companies in Non-profit organization category in Regina, Saskatchewan

1761 FB users likes FAv Foundation Inc., set it to 17 position in Likes Rating for Regina, Saskatchewan in Non-profit organization category

Summary

FAv Foundation Inc. is Regina based place and this enity listed in Non-Profit Organization category. Located at 3045 Saskatchewan Drive SK S4T 1H5. Contact phone number of FAv Foundation Inc.: 3065419650