we need your names!

22q community!

We are less than 4 weeks from race day!  We are trained, we are geared up, we are ready!

The thing is... we're missing some names.  We've been hard at work fundraising for this race.  Because of the amaziing generosity of our friends, families, and you, the 22q community, we've officially raised $13,869 to date, with more checks to be sent in to the Dempster Family Foundation.  We believe that by race day, we'll have hit our goal, having raised more than $20,000 to help families llike yours and mine!

This means, we'll be able to carry 200 names, one for each of the 200 miles the 12 of us are running, each one dedicated to a 22 q-tie!  We have 70 miles attached to names at present time - help us reach 200 names!

DONATE TO THE DEMPSTER FAMILY FOUNDATION IN HONOR OF OUR RAGNAR RELAY RACE AND YOUR 22-QT!

Laura and Scarlett Lopez

Our team suffered a blow earlier this week when one of my best friends and my college roommate Meghan announced she would no longer be able to run Ragnar with us because of a hip fracture from training!  We scrambled a bit, but today it is an absolute pleasure to introduce you all to the newest member of #werun22q, Laura Lopez, running on behalf of her 22q-tie Scarlett! 

"Hi everyone! I'm originally from South Jersey, but thanks to the military (and a 22q diagnosis), our family has moved five times in the past four years! My husband, Alex, is currently deployed. I started running about a month after he left, so I've only been running for about 3 1/2 months now. I needed to do something for myself and needed an outlet from all of the stress I have between worrying about a deployed husband and taking care of my 22q daughter, Scarlett, and my one year old, Harper.

Scarlett has 22q distal deletion syndrome, and she was diagnosed at a month old. She was only 3 pounds, 10 ounces when she was born, which is what led us to genetic testing. Since that time, I've learned more about 22q than I ever thought possible, and more importantly, I've learned how amazing and capable my daughter is. Scarlett has taught me more about life in her four years than I've learned in my entire life. I'm honored to be her mother. Through all of the struggles, I just remind myself that she's stronger than I could ever be.

I'm coming onto this team as a late arrival. When I first heard about the amazing group of 22q parents and supporters that were running the Ragnar Relay for 22q awareness, I thought to myself, "I can't wait to be on that team next year". But here I am, two months later, on the team! I'm ready to run some miles and conquer my first major race, all in the name of 22q!"

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It completely amazes me how awesome this 22q community is.  I think I may have mentioned it before, but it's worth typing again.  Kate and I met through facebook and instagram, when we realized through looking at pictures that we had more than a couple of things in common.  When we decided to pitch this team, we both reached out to people we knew who either ran, or had potential to be a runner (I'm looking at you, awesome Kari!)  This week, when a little panic set in because we are 5(!) weeks out from race day and were in need of another runner, STAT, Kate texted me and said, I know that Laura started running a couple of months ago and was interested in running with us next year.  I found her on facebook and next year became RIGHT NOW!  I am so thankful, Laura, that you were able to work things out with your family and join us!  

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We are ramping up our begging efforts for donations to the Dempster Family Foundation!  The race is 5 weeks from tomorrow!  We will need to get things in order for mile sponsorships at least a week before we leave for DC - if you are anything like me, I get the last minute procrastination thing.  Really, I do!  But, if you are at all interested in dedicating a mile for your loved one, please consider doing it today!  No donation is too small!  Help us meet our goal of raising funds and awareness for 22q!

CLICK HERE TO DONATE TO THE DEMPSTER FAMILY FOUNDATION IN HONOR OF #werun22q

Katie Chiet and Chase Serban

It has been so awesome "meeting" these other 22q moms and sharing our stories (I know we'll have LOTS to talk about during our 36+ hours together in the van!).  It is incredible to know that while we all have different backgrounds and come from different places, we share a lot of the same experiences.  Today, I would like to share my story and why this run is so important to me!

My pregnancy with Chase was pretty uneventful.  I was working full-time as a physical therapist and busy, busy, busy.  I ran throughout my pregnancy; my last race was a 4-miler at 32 weeks, but I was able to complete a marathon and a half at 16 weeks!  I was seen by a team of midwives and was followed by an MFM doctor, just as all of their patients were.  At 32 weeks, he noticed that I was developing polyhydramnios, and I was brought in weekly for fluid checks.  By 37 weeks, my AFI was up to 44cm, and an induction was scheduled for when I would be 39 weeks to hopefully prevent cord prolapse.  We discussed that a neonatal team would be present at the birth, but I'm not sure that ever equated in my brain or heart to a problem.  (We were never offered any further testing despite the polyhydramnios)

Chase came into this world and I was allowed to snuggle with him for a couple of minutes before he was whisked away to the NICU.  Because a lot of this is HIS story and not mine, I'm not going to overshare!  He spent 10 days in the NICU (apparently I STILL hold the record at 11 days!) and it felt like every.single.day we came in to visit him, we were told of another problem.  By the time we left the hospital, we had follow-up appointments with cardiology, ENT, GI, surgery, the pediatrician, and orthopedics.

When he was a couple of weeks old, someone suggested that all of his medical issues could be related.  There was no mention of anything specific, but it was enough to get me questioning.  I went home and consulted with Dr. Google (right?!) and DiGeorge Syndrome popped right out to me.  We made the appointment with genetics.  Then we needed to switch insurance and had other small crises to deal with and genetics got pushed on the back burner.  My mom and I kept a checklist of 22q symptoms and quietly checked things off as we noticed them in Chase.  Finally, when his heart defect went from a simple thing to a much more complex finding, I knew in my heart Chase had 22q.

His genetic testing came back a week before he turned 1, and we had the official word.  Chase DID have 22q11.2 deletion syndrome.  We added more specialists - endocrinology and immunology - and started services with Early Intervention.

I am a healer by profession.  My passion in life was working with patients who had suffered a traumatic brain injuries and spinal cord injuries.  My life's work was to help these amazing people get through their injuries and return to living life again.  I am thankful to have this background as I navigate this new world with Chase.  It is incredibly hard to know that I cannot "fix" him, but it is rewarding to know that I can help him in every and any way I can.

One of the ways I know to help Chase is through my running.  I ran previously for other charity teams - it is an amazing way to raise funds and awareness.  Running is my therapy - it helps me cope with the stresses of everyday life, the frustrations of 22q, the joys of successes we have, everything.  When I saw another group have such success with running a Ragnar for their charity, a light bulb went off for me.  A couple of facebook messages later, and this team was formed.  12 dedicated runners, each one of us loving one or more special 22qtie(s), wanting to bring attention to our daily fight.  OUR.  AS IN OUR WHOLE COMMUNITY.  I'm not a doctor.  I cannot change the challenges we were given - I can only try to find ways to help deal with them.  Raising awareness and funds to help families like ours is so important to me.  Despite working in a medical field, and having taken multiple courses on pediatrics, I had NEVER heard of 22q before Chase came into my life.  Now it IS my life.

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I want YOU all to know how amazing these 11 other runners are, which is why I started this blog in the first place.  They are just like you and I.  They are parents first, runners second.  I have never met more awesome people.  Each person has brought their natural strengths to this team and I am SO proud of what it has become.  I am so grateful that they were all on board to join this crazy team and so lucky that they have become my tribe.

We are 6 weeks out from toeing the start line.  We want to run for as many of YOUR loved ones as possible.  While our suggested donation is $100 per mile, we will accept whatever you are able to donate!  Please consider allowing us to honor your 22qtie!  You can visit our #werun22q's Dempster Family Foundation fundraising site or if it is more convenient, text "22qrun" to 71777 (standard messaging rates apply) and donate right over your cell phone!  As of this posting, we have 34 of our 205 miles covered - please help us in our goal to have ALL 205 miles dedicated!

THANK YOU!

An Open Letter About Our Charity of Choice

I received an email last night (yay!) and I'd like to address it here!   Thank you for helping me understand some concerns about our charity of choice and please let me explain:

There was a lot of consideration when we first had the idea to try to pull this race off.   We spoke with both 22q.org (Sheila) and the Dempster Family Foundation (Michelle). My first instinct was to go with the DFF and please let me explain why. Eighty years ago, no one had ever heard of ALS, although it was around and killing young men and women in their prime. Then one day, a young Yankee named Lou Gehrig announced that he could no longer play baseball because ALS was robbing him of his ability to function.  Suddenly, everyone had heard of Lou Gehrig's Disease. While this disorder that is affecting our loved ones will never carry a moniker like that, i do believe that it helps to have a recognizable name to something that is considered rare - it makes it relatable to people; 'oh look, so-and-so's child has it too!'.   (Many other charities have names lent from athletes or famous people - It seems that in order to bring in funding to a cause, it needs to be associated with someone the public recognizes)

This is an event that we are hoping to do annually, and the DFF offered to partner with us and help create the platform to do the fundraising. Due to it being the first year and not knowing what to expect from fundraising, we thought it would be more beneficial to donate whatever was raised to the DFF, since their mission is awareness and education focused. If we can have success this year, which is only possible with the support of the 22q community coming together and recognizing that all organizations out there have the same intention of helping the 22q community as a whole, then we fully intend on involving more organizations in the future races.

As i mentioned, we have spoken with 22q.org, and they completely understand and are supportive of us donating to the DFF. And they also know that if we can make this a successful race this year, we hope to expand upon it next year.  The Dempster Family Foundation is one of the leading donors/contributors to 22q.org, so in effect, they will see a benefit from the monies we raise.

(Please remember that we are only parents of children with 22q on a mission to raise awareness and provide assistance for families like ours - in no way are we professionals ;) we have received no financial assistance in pulling this together - i paid the team's $1600 registration fee personally and we've all been asking friends and family to help us foot the bill for van rental, gas, and equipment, in addition to the official fundraising we're doing, so that all of money received from families like yours goes directly to helping families like yours!)

Also, if you have time, please consider checking out all of the educational materials on the Dempster Family Foundation website; if you haven't already, i think you might be pleasantly surprised to see what they offer in terms of webinars and publications. 

All of this being said, if you still feel adamantly about your donation going to the international 22q foundation instead, by all means, please donate there.  Give us a shout out (and some way of knowing that a donation has been made) and we'll be more than happy to include your loved one on our journey.  The truth is, we want to bring 22q awareness more than anything and there are so many good charities out there.  If you are in Australia, donate to VCFSFA; in the United Kingdom,  try Max Appeal, etc. Just let us know you donated and we'll be happy to carry your q-t along!  We strongly believe in the Dempster Family Foundation and so they'll continue to be our charity of choice! 

https://app.mobilecause.com/vf/22qRun

Please keep your feedback coming!  It truly helps to make this successful, which is all any of us should want as we continue our mission to spread awareness and hope.

Katie Chiet, Chase's mom and team captain #werun22q

Training update!

Please excuse the absence of blog posts this last 2 weeks - Chase and I (and sometimes John) have been traveling and then there was the issue of the broken arm and so I've been away from the computer!

We are 9 and a half weeks out from Ragnar DC so I wanted to share with you some training updates from the team.  I am so incredibly proud of the team we've managed to put together - I'm sure most of you understand the time commitment required to properly train for a high mileage race and when you factor in that ALL of our training time is happening during the heat of the summer, well, it hasn't been a totally easy process!

From Kate:  "I swear, it was not this hot when I trained for my half marathon last summer! Whew- talk about some sweaty training runs! I am training for my first ever full marathon along with the Ragnar, so I joined a local run shop's training group. It's been so fun to meet other runners, and share with them why I am running the Ragnar! We have a detailed training plan, with a 6-7 mile work out each week to work on our speed, plus we have 3 days a week where we do 5-6 "easy" miles on our own. Then, we get together as a group and run a long run on Saturday mornings...the month of August will end with an 18 mile run! I've definitely begun seeing progress, and have improved my speed by shaving 30 seconds off my mile pace so far, so I think I will be ok to maintain an 11 minute mile for the Ragnar! Say a prayer for no injuries!"

Jocelyn is hanging out in Nova Scotia with family and reports that she's been getting in some good miles!  She tells me that there are some nice hills for her to train on and that she is feeling good!

Kari tells me that she has been averaging at least 10 miles a week.  This is awesome because before I asked her to be on this team, she wasn't even a runner!  She said she ran her fastest mile yet last week too!  Yay Kari!!

Christy is in beast mode.  She and Ben seem to be always in motion! :)  They have two of the sweetest little girls who help pace them on their bicycles on long runs.  Rain, shine, heat, humidity, morning, and night, they are truly a #fitfamily!  Every time I check in with them via social media, they are on the move.

I'll share with you what's happening here with me!  When I decided this team was a reality and we were a go, I started to put Chase in gym childcare to get some treadmill miles in.  The heat and humidity here in south Florida are just brutal, but there aren't too many hills for me to practice on (I have to get ready for 11 miles of rolling hills for leg 24!).  I've been lucky though - on my travels this summer, I've been able to run in lots of different locations, including Ft. Mill, SC and beautiful Kensington MetroPark in Michigan.  Both places have given me good opportunities to run on terrain I don't get here.  My brother-in-law in Michigan is a much faster runner than I am, and we had 2 really great runs this last weekend where I really pushed my comfortable pace and felt great.  I feel stronger than I have in a while and while I'm still afraid of rolling hills, I feel a little more confident in my ability to make it through.  I'm also pretty happy to be in double digit mile long runs!  I feel so lucky to have such good BRFs (best running friends) and we've settled into a good routine - Mondays are for speed, Wednesdays we run a Mickey Mile (for my runDisney Jeff Galloway fans, it's where you run 1 mile all out to see improvements and to help you figure out a reasonable pace) and follow it with an awesome strength class, and Fridays are for hills (either on the treadmill or in the hospital parking garage ;)).  We meet up with the local running club Sunday mornings at 6am for our long (slow) distance building run.  I can usually convince John (and Chase, although he requires far less convincing!) to come along on a 5 mile run Tuesday and/or Thursday from our local running store with friends - so that's where his training is!

And my favorite update comes from my sister, on behalf of Eric!  "Eric took a week off after a hurt back which was aggravated by a tumble down some stairs (on our vacation in South Carolina!). That tumble hurt his back more which made him walk differently which led to a fall down a few more stairs at Stone Mountain which resulted in a very swollen sprained ankle. After over compensating his other ankle started to hurt but after one trip to the chiropractor things seem to be looking up! He should be good to run this weekend :)  <--it was a pretty exciting trip!

I LOVE LOVE LOVE seeing how motivated all 12 of our runners are!  Want to know what else I love?!?!?!  That we are over the $2000 mark in our fundraiser!  

This weekend, we announced a new way for our 22q families to help us on our journey! 

We'd love your help to support the Dempster Family Foundation - we're asking for you to donate and sponsor a mile for your q-tie! For a limited time, we're offering a buddy mile opportunity! Maybe the $100 is too much? Consider teaming up with a friend to co-sponsor a mile - $50 each! We're opening up 50 miles to be run as buddy miles - if you are interested, tag a 22q buddy here to ask if they want to go in with you, then click on our link (https://app.mobilecause.com/vf/22qRun) to donate, and shoot an email to werun22q@gmail.com so we know who you are sharing your mile with! smile emoticon  

remember, your 22q-tie's name will be written on our van and we'll be carrying them along with us as we run their mile!

We want to include as many of you as we can as we tackle these 200+ miles.  Please consider donating to the Dempster Family Foundation and giving us 200 beautiful names to carry!  Your gift is tax deductible and the money we raise goes to the DFF to directly help families dealing with 22q (deletion AND duplication!). 

{I feel the need to reiterate the disclaimer here again - we have all paid our own way for this race - registration and travel expenses.  EVERY SINGLE PENNY goes to programs that help families and children with 22q.}

 If ANYONE has ANY questions, please do not hesitate to shoot an email to werun22q@gmail.com.

 

Eric Ziegelbauer

It is my pleasure to introduce Eric Ziegelbauer.  Eric is my beloved brother-in-law.  I really couldn't have picked a better person to marry my sister (yep, I handpicked the guy!).  When he says "family is everything," he means it. 

"I was always into sports growing up. In high school, I ran cross country and played soccer.  In college, I played intramural softball and took bowling and weightlifting. While in bowling class, I met Katie and she convinced me to try out for the UF bowling team. On the team, I met Katie's sister, Jesse.  She is now my wife, and together we have 3 beautiful children. Family is everything to us.  We are crazy people around the holidays, driving back and forth between our families, making a 3 hour drive at 2 in the morning so we can do Christmas eve with one family and be there for present opening in the morning with the other.  I remember when Chase was born - it was a Thursday and Jesse took the kids and made that 3 hour trip to meet our nephew.  It was a little while until he came home, so shortly after his homecoming, we made our second trip to the other coast of Florida and spent some time with our "diChase".   My boys instantly fell in love with their newest cousin, and when our youngest daughter was born, well, Chase was quite fond of her! (now that feeling is mutual!)

I picked up running a few years ago after watching/cheering/chasing Katie around Disney. Most of our runs are together at Disney, because its the happiest place on Earth (and because I'm really just a big kid myself!), with my wife, mother-in-law, and all the kids in tow.   When Katie asked if I would be on the team, I was excited and honored to support my family and raise awareness for my nephew. Whenever we are visiting Katie and her family (usually once a month), we go out for a nice, long run.  I am excited to share this journey and be part of this team.

P.S. I would like to apologize in advance for the rain.

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Eric and I have run more than 8 races together in the last 14 months.  It rained during Expedition Everest Challenge, then it rained during Wine and Dine, then it rained during the Family 5k at WDW Marathon weekend, and then we enjoyed a nice shower during the marathon!  I'm thinking we might need to run something out in California together ;)

I want to use this space to just tell you all how much Eric and my sister Jesse mean to me.  They have 3 biological children of their own, but they might as well say they have 4 children the way the love and care for Chase.  Literally, from his first day here on the planet, they have gone out of their way to be an exceptional aunt and uncle.    I am so honored that they will all be joining us in DC - Eric as runner #3 (he has the "ragnarliest" leg of the race!), and Jesse as our support crew, holding down the hotel room fort with Caleb, Kamden, Addison, and my 22qt, Chase.

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22q families, consider making your donation to the Dempster Family Foundation and sponsor a mile in your child's honor! We are asking that you try to fundraise a minimum of $100 for your mile.  Your $100 donation provides for 1 hour of educational advocacy, helps cover costs for educational programming to teachers, parents, and medical professionals, or helps defray the costs of sending our children to Dragonfly Camp! If $100 seems daunting to you, PLEASE set up your own "Be a Fundraiser" page - you have 3 months to ask family and friends to pitch in for your mile! Put away $7.75 a week, $33 a month, or ask 10 friends for $10! There are lots of ways to raise that money, so please don't feel overwhelmed!

 It is our dream to have all 206 miles run in honor of these amazing children!  Your 22q hero's name will be written on our team vans! Each runner will be given 3 buttons, one for each of their legs of the journey.  The buttons will have pictures of the children that particular leg is dedicated.  You will be able to follow along using the hashtag #werun22q on instagram during training and during our journey from Cumberland, MD to Washington DC.

As a thank you for your donation, for every $100 donation (or fundraised amount in your name), you will receive a picture of your runner embarking on their leg of the journey that carries them on your mile!

Help us ensure that the Dempster Family Foundation can continue to provide the services we all depend on to help our kids!

Kari and Ellyot Clancy

It is hard to believe it is July 1 already!  We are another month closer to our race, as most of us will be travelling to our destination 3 months from today!!

Today, I have the pleasure of introducing Kari Clancy and her son Ellyot.  I think Kari might have been the first 22q friend I made on Facebook after Chase was diagnosed.  

"Hello y'all! I was born and raised in Tampa Florida . I loved to run when i was younger, even joined the track team in middle school. Running around the neighborhood was also a stress reliever for me in high school. When I was 22, I packed up and moved up to Delaware with my Husband and our soon to be baby boy Ellyot. After a few short months of being in Delaware, we were introduced to the world of 22q. Since 2012, things have been one eye opening adventure. When Katie came to me with this opportunity I couldn't be more excited! The next day I went out, got a jogging stroller for my boys, a good pair of running shoes, and started training. I also learned I had asthma. I figured, if our 22qts can go through the stuff they do on a day to day, I won't let my lungs hold me back. I can't wait to do my first Ragnar and even my first race. Hopefully i'll get a few 5k's or 10k's under my belt before the big day!"

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When we decided to put this team together, I reached out to my 22q friends on facebook.  While we were trying to keep the project under wraps in case we couldn't get it off the ground, I was hoping to be able to find 12 people who were just as vested and interested in running a crazy long distance as I was.  I asked Kari, who said she wasn't a runner, but that she was willing to try.  I cannot tell you how impressed I am with how far she has come!  She laced up her shoes right away and now only a couple of months later, has several 6 milers under her belt!

Kari is not only runner 9 (van 2), but she has also been nominated team photographer :)

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22q families, consider making your donation to the Dempster Family Foundation and sponsor a mile in your child's honor! Your $100 donation provides for 1 hour of educational advocacy, helps cover costs for educational programming to teachers, parents, and medical professionals, or helps defray the costs of sending our children to Dragonfly Camp! If $100 seems daunting to you, PLEASE set up your own "Be a Fundraiser" page - you have 4 months to ask family and friends to pitch in for your mile! Put away $6.25 a week, $25 a month, or ask 10 friends for $10! There are lots of ways to raise that money, so please don't feel overwhelmed!  It is our dream to have all 206 miles run in honor of these amazing children!

Friends! we have several ways you can help! Choose an item off of our amazon wishlist (search werun22q@gmail.com), purchase a gas gift card to help us on our journey, donate $10 and pick a song for our playlist, make a donation through PayPal (email werun22q@gmail,com), or consider making a pledge to another 22q cutie's page so a mile can be sponsored in their honor.

Help us ensure that the Dempster Family Foundation can continue to provide the services we all depend on to help our kids!