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Welcome to Maggie Bates's Page

Maggie Bates

Maggie Bates

I am overwhelmed by all of the support I have received throughout this fundraising campaign. My village has been so incredible in supporting me throughout this journey, and together, we WILL add tomorrows for those with CF on our way to finding a cure!

In order for donations to count toward my fundraising campaign, they must be made by WEDNESDAY, FEBRUARY 13, 11:59 PM!


I will soon be honored by the Cystic Fibrosis Foundation at a special event recognizing outstanding young professionals in my community. In accepting this distinction, I have committed to raise money to help the Foundation realize its mission of controlling and curing cystic fibrosis (CF).

Please help me meet my fundraising goal by making a donation. Your generous gift will be used efficiently and effectively to help support vital CF research, medical and education programs.

Making a donation is easy and secure! Just click the Donate button on this page to make a donation that will be credited to my fundraising efforts. Any amount you can donate will be greatly appreciated!

Cystic fibrosis is a devastating genetic disease that affects the lungs and digestive system. More than ten million Americans are symptomless carriers of the defective CF gene. Advances continue to be made in finding a cure, but your help is needed now -- more than ever -- to help keep up the momentum of this life-saving research. Sixty years ago, children with CF usually did not live long enough to attend elementary school. Today, because of Foundation-supported research and care, the median survival age of people with CF is about 40. This is remarkable progress, but not good enough. We continue to lose precious lives to CF every day. To learn more about CF and the CF Foundation, visit cff.org. Together, we can make a difference in the lives of those with cystic fibrosis. Thank you for supporting the mission of the CF Foundation!

MEET SAMANTHA JO - she is the sister of my brother's fiancée, Stephanie. Samantha Jo remembers knowing she had CF from the very beginning, but she didn't fully understand it and the implications until she was in middle school. She knew it was hard for her to keep up with the other kids, and at this time, digesting food started to become difficult. Today Samantha Jo is a young adult, and life with treatments can be very difficult to manage, as they take several hours a day. Juggling those with a full time job, part-time school, and an internship can be very hard and frustrating, so managing her time is very important. While she's doing her treatments, she likes to catch up on school work or watch her shows from home so she feels like she is multi-tasking.

I asked Stephanie what it's like to have a sibling with CF and what she remembers from their childhood. Stephanie recalls Samantha Jo having multiple surgeries on her noes, making sure her salt intake was enough, being careful when she got sick, and the knowledge that she has to take medicine for the rest of her life. Mostly though, Stephanie remembers that NONE of those things stopped Samantha Jo from being active. Stephanie says her sister is an amazing dancer and is now completing her final semester to receive her Masters in Social Work.

Something that is difficult for Samantha Jo that people might not expect - having kids. Her life goal is to have a family, so this goes through her mind ALL the time. Men with CF are infertile; women are not, however, there is such a higher mucus build up, so it is difficult to become pregnant naturally, and many people don't understand that CF does not only affect the lungs but other organs in the body.

Samantha Jo wants to encourage people not to treat someone with CF differently because they are capable of more than you think; nothing hurts more than someone treating her differently because of a disease she has no control over.

Samantha Jo appreciates the CF Foundation and the work they're doing to find a cure for CF. She's benefited from the new medications that CFF has had a huge part in developing and has participated in Great Strides, along with Stephanie. Most importantly though, the foundation encourages her not to give up and that there is hope for a longer life with CF.

MEET ROD JACK - he is the President of the Knoxville CFF Board. At a recent board meeting, when I met Rod and asked how he got involved with CFF, his answer was simple: Tucker. A little over ten years ago, Rod's wife Jennifer was pregnant with twins, a boy and a girl. They were informed that the children had a 25% chance of having CF since Jennifer was a carrier of one of the genes. After testing, they found out that one of the twins was positive for CF. They had 4-5 months to learn everything they could about CF - they met with other families with CF children and immersed themselves into learning. Rod got involved with the board of directors immediately after Tucker was born to be a part of finding a cure for his son.

Life spent caring for a child with CF is a lot to deal with, although treatments and frequent doctor visits are just part of every day life for the Jack family. Pharmacy bills have to be managed on a monthly basis, as a normal month can rack up $6,000-7,000 just in pharmacy bills. The foundation has helped a lot with insurance and dealing with the financial burden that comes with CF. Rod also runs his own business, so Jennifer does most of the routine doctor visits with Tucker. The Jacks have three children, so when you thrown in a life threatening disease on top of it, that's the number one priority and everything else falls in after that.

Today, at 10 years old, Tucker's life expectancy is 39 years old. Can you imagine knowing you might outlive your child? Rod says that is always on his mind. You hear "life is short" a lot, but most of us don't have to put a date on that. CF kids look totally normal, and so it can be hard for people to think there's really anything wrong with them - which is a good thing, the Jack's want Tucker's life to be as normal as possible.

The CF Foundation has been a real help to the Jack family - the Compass program helped with some legal planning. Most importantly to Rod, the foundation has given their family hope that a cure will be found for this disease. CFF has brought a lot of life extending and benefiting treatments to market without receiving any funding from United Way, government, etc. They've taken a proactive approach to the disease - they've built their own lab, which employs around 26 scientists working on gene editing, stem cell research, and drug compounds. Ultimately Rod (and all of us) hopes that with the donations it receives, the CF Foundation will find a cure, but in addition to that, that the will continue to better the lives of those who have CF already and continue to improve the social aspect of the disease. Most people don't know that those with CF cannot be in the same room due to germs, so those individuals can only connect and interact by virtual means. The Foundation is continuing to create and improve platforms for this interaction. They've even been brainstorming with siblings of those with CF to develop an interactive app - thank goodness we live in the age of technology!

YOUR DONATIONS MAKE ALL OF THIS POSSIBLE FOR THESE FAMILIES!

DEC
3

Join us for Breakfast with Santa on December 8th from 8 - 10 am at Pero's on the Hill as we countdown to Christmas and raise money for the Cystic Fibrosis Foundation! We will be serving a pancake breakfast, and Santa will be coming to town to visit with the kids! Kids will be able to take pictures with Santa, which will be available to parents after the event for digital download. Tickets are $8/ea with a max of $32/family in advance; $10 at the door - see welcome message above for info on how to purchase tickets!

NOV
15

Please watch this video of Tucker and his family: https://cffoundation.sharepoint.com/:v:/s/TNOO-Tennessee/EWPnkV7Ilf9FmP5_02PMFvgBaOlaYyT6qLyEOu0kIJiMLg?e=4%3angP2VW&at=9

Tucker loves to play soccer!

Meet Tucker Jack - he is doing his treatments in this picture

Meet Samantha Jo!

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$10,624
raised of $12,000 goal
 

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