"I appreciate the value of genetic medicine and trust that we will understand the impact of genetics on most diseases in the coming years. That's why I decided to bank DNA on four generations my own family. It was a Christmas gift for my children to secure DNA for them, myself & my husband, our parents & grandparents. In addition to planning for my financial future by completing a will and buying life insurance, I wanted to make sure my children and family have access to DNA samples for as many people in my family as possible. We've already needed to access a family member's sample shortly after she died. This was a tremendous help to try to clarify a heart related genetic issue in my family. While there are still some unanswered questions in my family, and as science advances, I know that we will have access to DNA on key family members if needed."

What would you say to someone if they asked you your opinion about the value of DNA Banking to your family?

"In addition to planning for my financial future of my family by completing a will and buying life insurance, I wanted to make sure my children and family have access to DNA samples for as many people in my family as possible. This is just as important as planning for their financial security. I would say that the value of DNA banking is 'priceless'."

"There is a history of lung cancer on my late wife's side of the family. Her father died at 62 of lung cancer, her younger brother at 54 of lung cancer. My wife was diagnosed with lung cancer and pulmonary fibrosis in December 2011. We banked DNA samples so that her descendents might get some time benefit from predictive genetic markers.

My wife died 10 December 2012 of the fibrosis. Shortly thereafter it was discovered that our son had lung cancer and pulmonary fibrosis. He died in January 2015 of the fibrosis.

We are now closely involved with a pulmonary research group in the genetic analysis of the whole family, including [my late wife] whose samples were retrieved from PreventionGenetics. The hope is that there might be indicators for these two diseases or lack of them to help provide some predictive information for the ongoing family.

Answers, if any are being worked on."

"My mother was suffering from a disease called Frontotemporal Dementia. This disease was unfamiliar to our family. However, we were very much mistaken. My mom's first cousin was a huge support system to me. She was calling to see how I was because she knew how much stress this disease causes to the family. She said her mother suffered from Alzheimer's. One day she called me up and said she had bad news. That she had ALS. I immediately thought to myself, "what are the chances that my mom and her had rare diseases?" I went on the internet and typed "Frontotemporal Dementia and ALS" into the computer. Then there were a bunch of websites that discussed a genetic gene that causes either ALS, Frontotemporal dementia, or both. I called the hospital the next day and they recommended that I bank my mother's blood before she passes. I did this immediately. A year and a half later, my mother passed away and 10 weeks later my mom's first cousin passed away. After a year of their passing, I did some research and found out that my great, great grandmother died of the same thing my mom did. Then I realized that my great aunt did not die of Alzheimer's but she died of Frontotemporal dementia. From what I was told, that in order to get the gene, one of your parents had this gene. This means that five generations did not escape this disease. I was sure that my mom was positive for the gene. I just recently asked for my mom's DNA to be tested and sure enough she was positive. My sister and I are now going to be tested to see if we carry the gene. If it wasn't for companies like PreventionGenetics, I would have never known a test like this could be done. My sister and I are now going to be tested to see if we carry the gene. We are in our mid 40's and both ALS and frontotemporal dementia show up in your late 50's . We decided we would like to prepare ourselves for our future. This isn't a positive letter, it is a true heartbreaking story. However, I think that genetic testing is a good thing because if there is any thing preventative my sister and I can do to prevent this disease from coming, we will be the first in line to sign up."

What would you say to someone if they asked you your opinion about the value of DNA banking to your family?

"DNA banking is great. I think it's better to know than not know. It's better to be educated and prepared. You might be able to prevent something by the knowledge of DNA banking."

"On October 22, 2013, the day my father's first grandchild & my first child, was born, we learned that my father had been diagnosed with pancreatic cancer. This was the most devastating news that our family had ever experienced. Sadly, on June 30, 2014, my father lost his 8- month courageous battle to pancreatic cancer. He was only 56 years old. In 1988, my father's mother also succumbed to pancreatic cancer. My siblings and I have become extremely concerned for our futures and our children's futures. A few days before my father passed, we extracted a sample of his DNA for banking and future genetic testing purposes."

"A few months after the passing of my father, my family and I sought out a genetic counselor to discuss our family's health history of pancreatic cancer and other diseases. Once the genetic counselor obtained all of the background facts, the genetic counselor informed us of a genetic testing panel that was recommended to see if there were any mutations from my father's DNA sample. If the panel came back positive with a mutation, then as a family we would provide a sample of our own DNA for further testing. We successfully retrieved a small sample of my father's banked DNA for the genetic testing. The report from the genetic test indicated that no mutation was identified on the panel. Genes on the panel included APC, ATM, BRCA1, BRCA2, CDKN2A, EPCAM, MLH1, MSH2, MSH6, PALB2, PMS2, STK11, and TP53. Full gene sequencing is performed for 12 of the genes (excluding EPCAM). Gross deletion/duplication analysis is performed for all 13 genes. This result meant that as a family no further testing was needed. While this was a relief; it is still discouraging because the genetic counselor stated that we should perhaps try again with testing in another 5 years from now due to possible science advancements/knowledge on the pancreatic cancer disease. Unfortunately, there is still so much to learn about the cause and early detection signs with pancreatic cancer. Most pancreatic cancer cases are discovered once the disease is at Stage IV and already too late to treat. Nevertheless, as a family we are fighting every single day to help further the pancreatic cancer research by becoming actively involved with the Pancreatic Cancer Action Network (PANCAN). Last year, as a team in PANCAN's fundraising event, the PurpleStride, we helped raise over $13,000 alone. This is going to be our second year participating in the PurpleStride, and we are striving harder to make this year even better than the last!!"

What would you say to someone if they asked you your opinion about the value of DNA banking to your family?

"I would strongly recommend DNA Banking to anyone and everyone, even if there is no hereditary disease. The significance of having DNA stored for future genetic testing purposes can prove to be most beneficial for future generations to come. If the technology and knowledge are able to identify any and/or all mutations in a gene, this could help prolong or even save a life! If the science is not there quite yet, the DNA Banking sample could potentially help researchers progress in their studies on disease. I look at DNA Banking as a win/win decision!"

"P.S. - ... Prevention Genetics has been wonderful to work with!! Always super quick to respond and take action on things. Thank you!! :) "

"When my husband was dying the doctors told me I needed to bank his DNA as somewhere down the line it could help my children. I didn't know anything about genetics but by the grace of God I listened to the doctors and banked his DNA. After two years of doing nothing one day I really felt I need to go back through his medical records and in a flash I for the first time I saw the words LYNCH and I figured it out... Fast forward we were able to use the blood to Identify the gene in my sons and we are now able to do preventative care for my sons. This may have saved their life and God willing they will not end up with the same fate as their father. My son has been tested and he is positive for Lynch just like his dad. If it were not for this service Lynch would have put him in an early grave and now my children will outlive me."

What would you say to someone if they asked you your opinion about the value of DNA banking to your family?

"I believe it is the best thing you could do to secure a future for your family and God is great in allowing this service to have come about."

"Our oldest daughter passed away unexpectedly in September 2013. She was one week shy of turning seven years old. She was at home that day recovering from symptoms of an upper respiratory infection. She was on the living room couch watching her favorite cartoon with her younger sister when she became unresponsive. The SUDC foundation suggested we bank her DNA, as her cause of death was ruled sudden and unexpected; in other words no cause of death was ascertained. We have provided a sample to do an in-depth genetic test."

What would you say to someone if they asked your opinion about the value of DNA banking to your family?

"DNA banking is a hope that someday the medical community may be able to provide closure to a family who has lost a loved one mysteriously. It provides hope when there are no answers currently."

"In November of 2013 my mother was diagnosed with terminal cancer and was given very limited time to live. Within the month, my mom passed away. While we knew she had aggressive cancer, the doctors were unable to determine the 'type'. We immediately made the decision to store DNA with hopes of being able to do further testing post my mom's autopsy. After my mom's passing and during her autopsy, it was determined that my mom had ovarian cancer. We were also able to determine from historical autopsy paperwork on my grandmother, that she too died at a young age of 'female issues'. Doctors quickly suggested that we begin genetic testing. We were thrilled that we stored my mom's DNA because we were able to determine that my mom was a carrier of the CHEK2 genetic mutation. I was then able to be tested in a very targeted way. It was determined that I too am a carrier and have an increased risk of both breast and ovarian cancer. I recently went through a preventative hysterectomy. Thanks to the DNA bank at PreventionGenetics, we were able to get good answers and I was able to make an educated decision about my future. Likewise, my breasts are being very closely monitored for breast cancer."

What would you say to someone if they asked you your opinion about the value of DNA banking to your family?

"I would say absolutely do it! If nothing else, medicine and genetic research are evolving so much and so quickly that it can be a bit of an insurance policy. Plus, for those with inquisitive, scientific, or curious minds, it may help give you the answers or clarify what you need in your own medical cases. I was personally very thankful that we stored my mom's DNA. It not only gave us insight into why she had ovarian cancer, but it also put me down an important path to protect myself."

"Someday, I thought, someday someone will ask me about genetic testing and DNA banking and they won't be talking about science. Someday when someone asks, they will know that they are asking about my sons."

"Today is that day. A letter came from PreventionGenetics asking me for my story. 'PreventionGenetics is looking for personal stories or testimonials from our clients who have recently withdrawn a DNA sample for the purpose of testing,' the letter reads. 'Your feedback will help us reach people who have never heard about DNA banking.'"

"It seems strange to share my story for marketing purposes, but DNA banking and genetic testing defines such a huge part of who I am. My boys, my grief, my struggle, my role as a genetic cautionary tale -those things define me more so than my life roles as a writer, a mother, a wife, a daughter, a granddaughter or a friend."

"DNA banking isn't the beginning or the end of my story. It's just a milestone, a decision that I made minutes before my surgery with John. I held my husband's hand as the genetic counselor asked if I wanted to bank John's DNA."

"'Give him your credit card,' I told my husband. "Do it now before I go into surgery. Do it NOW.'"

"The GC, who had asked so sheepishly, so quietly, stared at me for a second before I snatched the pen from his hand and scribbled my signature on the form. Later I was told that most mothers in my situation - grieving a child, going into surgery, uncertain of the future -shy away from DNA banking. Maybe it's more grief, more decisions. I know I felt anger at anything and everything medical for a while, under the veil of my grief and the rationale that nothing would bring John back to me- so what's the point? Why eat? Why sleep? Why care? Why deal with more paperwork and more insurance representatives and doctors and nurses and needles?"

"The truth is, we had gone through 'every' genetic test- they all came back normal. In that moment, I didn't know about whole exome sequencing. But I knew that I wanted answers, and if answers came in 10 or 20 or 30 years, then that's when I would get those answers."

"To the wall, remember? I was going to take this to the wall for my babies. And I did. And it started with my signature and my husband's MasterCard. It started the moment I decided to bank John's DNA."

"It was Drew's exome that gave us the big answer of Congenital Disorder of Glycosylation 1G, but having John's DNA meant that the scientists at Baylor could confirm John's genetic disorder, too. Knowing the answer for both of my boys has brought me more peace that I can adequately express on any blog or to any counselor or doctor."

"Knowing the killer genes was important to me, and that was my focus in the four months it took for the exome results. Being able to say 'Congenital Disorder of Glycosylation 1G' is a gift. But the true value of the answer came awhile after April 11, 2013 (Exome Day). I know so much about my boys - the boys I will never truly know - because of that diagnosis. I know they were blind and deaf. I have a description of their faces instead of just fuzzy ultrasound photos. I know that they weren't in pain, but that they would have been born to pain. My choices for them are validated in my heart. I carry the emotional pain of my decisions with me so they would never have to feel even a second of physical pain. Their memories are of the feel of my body and the vibration of my voice."

"My quest for answers somehow brought me all the peace anyone could get out of my tragedies. Looking back, the moment I signed the DNA banking form was pivotal in the diagnosis, sure, but it was also a milestone in my grief journey- a journey I will take my entire life."

"So yes, PreventionGenetics, use my story. I know that I am the beneficiary of brilliant genetic research done by compassionate people at both Baylor College of Medicine and The Cleveland Clinic. I know that there are mothers who don't have the very human benefit of those brilliant people, for everything from expert genetic counseling to holding their hands during invasive testing, always having a tissue for their tears, and to share their 'to the wall' commitment to answers. They may not have a genetic counselor with a form and a pen to help make answers possible."

"Use my story, PreventionGenetics, and help those women take it to the wall for their answers."

"They won't regret it."

Margie Netzel

http://beyondtheexome.blogspot.com

"We chose to bank our son's DNA in case we decided to do any genetic testing down the road. At the time of his death, we weren't ready for that, but a year later, we decided we wanted answers and were glad the DNA was stored."

"In fact, testing of his DNA did provide some closure and answers for our family. We confirmed our son had a rare mutation in a cardiac gene and now were able to test the rest of our family for it."

What would you say to someone if they asked you your opinion about the value of DNA banking to your family?

"I would encourage them to bank DNA. Our son died unexpectedly and suddenly, and our initial feeling on genetic testing changed as time went on. Also, the field is growing and improving so quickly that it's a good back-up plan to store DNA, even if you don't think you want/need it now."

"Our parents had four children and two of the children died from cancer. Our sister wasn't able to have children since she had ovarian cancer at 25, then breast cancer, then colon cancer. She loved her nieces and nephews. She wanted to have her DNA banked and genetic testing done to give them information about what preventive testing they should be having done. When she was in the hospital after being told the outcome wasn't good, she still took the time to meet with a genetics counselor. It was important to her. We were able to get a report which gave us helpful information for the nieces and nephews, as well as the two of us still living."

"Anything we can do to help our families with information that could help them with medical issues is important. PreventionGenetics has been fabulous to work with."

"My son, 41 years old, died suddenly 3 1/2 years ago. We didn't know why. Autopsy determined his heart was enlarged. I asked that any blood be kept for genetic problems testing. Because of heart problems discovered the last 3 years in my family the Genetic Counselor helped get the DNA from my son stored. I had to try and do whatever it took to protect my other son and grandchildren."

"Recently a gene showed up in me and four of my siblings, I am the only one not showing symptoms. I had my son's DNA at Prevention tested and it came back positive. I have had my other sons tested, negative. Both grandchildren, one negative the other pending."

"PreventionGenetics allowed me to help my family to know if they were at risk (for a heart condition) because they stored my son's DNA."

What would you say to someone if they asked you your opinion about the value of DNA banking to your family?

"There are not enough words to describe the value of DNA banking. It allowed me to test my son's DNA so I could test my other son's and grandchildren's DNA to see if they were at risk for heart disease."