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Picture link!

Wednesday, July 22, 2015 6:33 pm

Here we are! I uploaded all the pictures for the event here:

https://www.facebook.com/media/set/?set=a.10153537008334874.1073741925.243044679873&type=3

Houston we (had) lift off!

Wednesday, July 22, 2015 6:08 pm

Well well well! We have FANTASTIC news!

So last week, it was a nail biter. We got down to Thursday waiting on the funds to clear and THEY DID! Our fantastic CAO booked reservations on a flight out after my Cell Biology final for the Friday night, several delays, lay overs, and a 30 minute cab ride later, I arrived in the Houston medical complex at 1am hotel and hit the hay. (Well, after Domino delivery because in my rush I had completely forgotten to eat.)

Can we PLEASE TALK about Texas Medical center? First off this….city, that is exactly what it looks like, literally, is over 1000 acres large. Let me repeat, it is over 1000 acres large. It goes on for DAYS! Wikipedia says that it is the largest medical center in the world, “with one of the highest densities of clinical facilities for patient care, basic science, and translational research.” https://en.wikipedia.org/wiki/Texas_Medical_Center And my goodness it is overwhelming, even at night time. I have visited many hospitals, but this was the first time I have been just taken aback by the sheer size of it. It is a city to itself.

The city of Texas Medical Center

The city of Texas Medical Center

The next morning coordination went brilliantly. We had the programs picked up, food brought in along with cup cakes and signage by our own Brittany Isham and her amazing family. I met the UT Houston Cooley Center manager, Paula Hobbie at the door promptly at 11am who helped set up the center and coordinate everything. The facility was absolutely stunning! I could not believe that we had gotten that space! Their coordination was so wonderful and they were so incredibly flexible with everything.

Our turnout was not as much as I would have hoped, but I think part of that was because we had not had enough time to turn it over to our public even though we posted daily on social media and email blasted our over 2000 email listings as soon as we had confirmation for the space. However, there were families who had driven in from 4 hours away in Texas and one from Louisiana!

The speakers were incredible! I wish we had the funds to have recorded the session as I know all of our parents globally would have loved to have heard and seen it presented! Dr. Mark Canfield PhD Mark A. Canfield, Ph.D. is the Manager of the Birth Defects Epidemiology and Surveillance Branch, Texas Department of State Health Services (DSHS), a program started by him in 1994 and that includes the Texas Birth Defects Registry. From 1996 to 2014, he also served as the co-Principal Investigator of the CDC-funded Texas Center for Birth Defects Research and Prevention, also based in the Branch. From 1983 to 1994, his work focused on infectious disease and environmental epidemiology at the local public health departments (Houston/Harris County, Texas). Dr. Canfield received his M.S. in Pharmacology and Toxicology from the University of California, Davis in 1979 and his Ph.D. in Epidemiology from the University of Texas-Houston School of Public Health in 1993. He is an Adjunct Professor of Epidemiology at the University of Texas-Houston School of Public Health and an Adjunct Associate Professor of Epidemiology at the Texas A&M School of Rural Public Health in College Station. In 2001, he was President of the National Birth Defects Prevention Network. In 2014-2015, he served as Secretary-Treasurer of the International Clearinghouse for Birth Defects Surveillance and Research, based in Rome. Dr. Canfield has over 30 years of experience in public health epidemiology in Texas at the city, county, and state levels. He has collaborated with numerous researchers and students, resulting in over 140 peer-reviewed articles pertaining to birth defects, infectious disease, and other epidemiologic and public health issues. He took time to explain his research to our parents in a way that was not overwhelming and took all the questions brilliantly. It was amazing (and just what we wanted!) to see his information shared with the medical presenters who said some of what he was sharing was not known to them!

 

Dr. Mary L. Brandt, MD was our next presenter, she is a High Honors graduate of the University of Texas. She attended medical school at Baylor College of Medicine, where she was inducted into Alpha Omega Alpha Honor Medical Society. She completed her General Surgery residency at Baylor College of Medicine under Michael E. DeBakey, and went on to complete training in Pediatric Surgery at Ste. Justine Hospital in Montreal. Following her training, she returned to Baylor College of Medicine where she is currently a Professor of Surgery, Pediatrics and Ethics.

In her role as an educator, Dr. Brandt teaches embryology to first year medical students and teaches students and residents daily on the wards and in the operating room. She previously served as Associate Dean of Student Affairs and currently serves as the Interim Senior Associate Dean of Medical Education at Baylor College of Medicine. Dr. Brandt has received numerous teaching awards, including the highest award given at Baylor College of Medicine, the Robertson award for Excellence in Education.

As a pediatric surgeon at Texas Children’s Hospital, Dr. Brandt cares for the full spectrum of surgical problems in children, from tiny premature infants born with congenital anomalies to teenagers with trauma, tumors or other surgical disease. She is recognized nationally and internationally for her leadership and contributions to the field of pediatric surgery and medical education. She has served as the chair of the Section on Surgery of the American Academy of Pediatrics and as the secretary of the American Pediatric Surgical Association. She is also a member of the American Board of Surgery (Pediatric Surgery Board) and is a Governor of the American College of Surgeons. In addition to her clinical expertise and leadership, Dr. Brandt is an established and successful clinical researcher with 155 peer reviewed publications, 26 chapters and 2 books published to date. As a mentor to students, residents and faculty, she has developed a strong interest in self-care for physicians and speaks and writes regularly on compassion fatigue, work-life balance and the art of medicine.

Interestingly, Dr. Michael Helmrath Cincinnati Children’s hospital who initially was a huge reason as to why I began Avery’s Angels and also the main inspiration for the event, was trained by Dr. Brandt! I had no idea until we were talking prior to the talk! We took a picture to send to him. These vital connections are so important to the cause!

Dr. Moore-Olufemi presented on current research done on gut dysfunction as well as treatments and their successes for our long term patients. Dr. Moore-Olufemi had called me last summer once she found our organization and really got this event spearheaded for UT Houston. Dr. Brandt had come in that July and provided another tier to the efforts, combined with the enthusiasm of all three for the disease and information dissemination, the event was possible. The collaboration was crucial.

Dr. Moore-Olufemi is an Assistant Professor at the University of Texas Health Science Center at Houston Medical School in the Department of Pediatric Surgery. She is board certified in general and pediatric surgery. She is a graduate of the general surgery residency and pediatric surgery fellowship at the University of Texas Health Science Center at Houston Medical School, Houston, Texas. In addition, Dr. Moore-Olufemi completed a T-32 Trauma Research Fellowship at the UTHSC-Houston Trauma Research Center.

Dr. Moore-Olufemi is a basic-translational researcher with interests in intestinal dysfunction and remodeling, pediatric intestinal failure and surgical nutrition. Her primary research is focused on gastroschisis-related intestinal dysfunction. Her research program supports medical students and surgical residents interested in pediatric surgical basic-translational research.

The end result was just as I had hoped it would be. I wish we could have provided the opportunity to far more people but we had to start somewhere, and we did! The great thing is that the vision pulled through and those involved could clearly tell just how important this information was and just how much the community, medical, research patient and otherwise stood to benefit from it.

I am hoping, with absolutely everything, that the seed has been planted. It was amazing to be part of, and I really hope it helps launch a whole new aspect of our exploration and efforts.

 

I tried to upload other pictures from the conference but it’s not letting me!!

Delays and the joys of funding

Tuesday, July 7, 2015 1:51 am
Here are the states currently who have declared July 30th Gastroschsis Day. We filed this year in all 50 thanks to our volunteers! We are now just waiting for news back on whether the governors have approved them!

Here are the states currently who have declared July 30th Gastroschsis Day. We filed this year in all 50 thanks to our volunteers! We are now just waiting for news back on whether the governors have approved them!

Welp what a summer this has been! Between taking care of my 2 children (a soon to be 3 year old and a 4 going on 18 year old) and taking my Post Bach classes and managing the NPO I have not even had the chance to realize that it is actually July! Here we are and here we go!

We should have everything situated and now we are just trying to drive registration and interest. We have plans for the children to be entertained, signs have been donated and we now even have cupcakes! The UT Houston Medical School folks have been busy also helping us find sponsorship and promoting the event to colleagues. I am hoping we get a good turnout.

This infographic is one that I love so much. This clearly shows why rare diseases like Gastroschisis require special attention and conferences just like the one we are planning. We hope this adds to the body of knowledge and helps our patients receive the best care.

This infographic is one that I love so much. This clearly shows why rare diseases like Gastroschisis require special attention and conferences just like the one we are planning. We hope this adds to the body of knowledge and helps our patients receive the best care.

 

My biggest disappointment right now is that a large donation check we were counting on for May to June did not come in as we had hoped. Because of the generosity of WFU and the fellowship I have been out-of-pocketing our shipping expenses (over $600 in care packages, bereavement packages, pamphlet distribution and outreach) which has ate into my budget for ticket and hotel. This is normal for us. While we service over 10,000 families we do so on a very meager budget. Every penny we get goes back to our families directly, we do not have much overhead minus our insurance, data base costs, websites, fax and phone lines and PO Box (they do add up when you’re not getting thousands of dollars in donations). Our shipping costs on average run around $600-$800 a month, we send that many carepackages, bereavement, awareness materials and Hub support out. I have gotten very frugal in our shipment, I know what envelopes and boxes cost about to ship domestic and international (we do equal amounts of shipment in and outside of the US). This stuff is crucial to our mission, it is important to me that we are not just a virtual space but we are also physically present for the worst parts of many of our family’s lives. We do so in this way and actively supporting local efforts for families to meet. Normally what would happen is that we would have to wait until our next large donation came through and send packages, so I am happy that I could do it for our families, however it did cut into the allocation for travel. We are hoping that the check will come sometime this week and perhaps I can make some arrangements to be there. It is more important to me that we have the funds to cover the costs of the event and it happen than me be there in person.

We have a few families who are going to be attending the event from neighboring states and many in Texas who are excited to see what their state has been doing and is up to. Last weeks of the push are on us and I am hoping all the pieces will fall neatly into place.

The conference has a bittersweet date for me. Avery went down to the OR on July 14th Avery went into a exploratory GI surgery he never recovered from. July 30th is International Gastroschisis Awareness Day as it was the day we took him off life support after an EEG confirmed he was 100% brain dead. This month is kind of a hodgepodge of various emotions as my youngest son, Knox, was born on July 25th, 2012, 3 years after his brother. The reason the conference is personally so important to me is that Avery’s surgeon, Dr. Michael Helmrath, MD now at Cin. Children’s Hospital was such a crucial member of our team and a major driver for the foundation. I will never forget him coming to explain Avery’s care to us. I remember him telling us that he was conservative with his interventions for cutting bowel out of Avery because “I am not just concerned about him right now, I am also worried about Avery when he is 20 and 30 years old as well.” I remember thinking “This man really loves my son too.” When the first EEG results came back that Avery had passed, Dr. Helmrath took both mine and Jared’s hands with tears in his eyes and told us “If this happened every day of my life I would not be able to do what I do.” He was also one of 2 physicians to speak at Avery’s funeral and made sure we knew how important this movement was. I remember speaking to him amongst others at our first meetings on AAGF, he told me back in his medical school days everyone thought he was nuts for wearing a pink shirt….his mom was part of the initial Breast Cancer movements. When I had asked what the team would think would be most beneficial of a foundation directly for the medical world he piped in right away saying “We need a conference, a symposium where we all get together from coast to coast and talk about our key findings, our research, what we have seen, the patients we have had. I have done a lot of research on the bowel, but we need to be in the same rooms together, talking.” For me, this conference is about honoring Dr. Helmrath’s legacy in the foundation as well as the true need for this event, not just in July but in continued development. Serendipity had its hands on this in that Dr. Moore-Olufemi, one of the most vigilant supporters of the Texas event is also a colleague of Dr. Helmrath’s.

This is the last picture I took of my son Avery before he spent 12 days on life support following a GI surgery on 7/14/2009. This conference is part of his legacy.

This is the last picture I took of my son Avery before he spent 12 days on life support following a GI surgery on 7/14/2009. This conference is part of his legacy.

I cannot wait to post later this week…I am hoping for great and even better news!

Houston we have LIFT OFF!

Wednesday, June 17, 2015 7:27 pm

I am SO excited to announce that as of LAST Thursday we are APPROVED to use the UT Houston space! We spent most of the weekend coming up with a logo that incorporated the elements we visually wanted, only to find out there were branding issues so we had to scramble to rework. But we NOW have a working Conference webpage, registration link and PR!

So I can now officially say that after 6 months of planning, Avery’s Angels Gastroschisis Foundation is PROUD to announce the First Gastroschisis Conference at the UT Houston Medical School in Texas! Complete with conference flare here: http://www.cafepress.com/aagf/12607201

I am pretty darn proud of the logo. I was really searching for something that represented an on going journey and how all members are connected. I also wanted to show that fundamentally this conference is a crucial component to better understanding, preventing and treating disease. Because we are a higher occurring yet still rare disease, I wanted to reemphasize the journey and continued need for advocacy and energy visually. Megan T and I went over details on the image that no one would ever imagine. It is amazing how much work has to go into every detail!

The next step now is to get our sponsors in quickly and set up the details. I am so excited I could giggle myself to death! Please visit the website and our social media page. I think you’ll be inspired as to what a few people can accomplish!

What to do?

Monday, June 8, 2015 3:09 am

Timelines are beginning to start coming faster and faster. We are waiting on word back from UT Houston on date and time officially, but I believe it will be the 18th of July for sure! Coordinating times and dates between 2 pediatric surgeons, a University institution and a major researcher for the DHHS/CDC is challenging! But we are bound and determined! I know we will hear back this week on what UT Houston has said and the next step will be a marathon until the final date.

We have decided to make sure we have volunteers and a separate area for the kids to have crafts and maybe some face painters and balloon artists.We want parents to attend but that will mean kids may not want to sit through 2 of statistics and medical talk. This way the event is accessible to everyone impacted. I am also thinking about approaching Icing Smiles, and incredible Nonprofit that provides cakes for medically necessary children and siblings for their birthdays or celebrations. They’ve serviced many of our families around the globe and I think a celebration cake to mark the first of hopefully many meetings such as this for the potential benefit of current and future patients will be great!

The team has discussed looking at creating a booster shirt sale for the event. Who doesn’t like a commemorative shirt? The problem is, in case anyone has NOT done a shirt fundraiser, is the profit margins are small at best. If you buy in bulk you’re always left with 5-10 XXLs or something that kill the margins. Children’s sizes and toddler sizes tend to be more expensive, so adding them on can also make the profits plummet and presales can be a nightmare with people promising to pay or orders getting messed up. I have been involved with at least once every year we’ve been in existence and they’ve never been smooth sailing. Typically we just throw up a new design on our cafepress or zazzle shop and take the small percentage we get from sales there and not go through the headache. But our families have had some success with the Booster Shirt Sales sites so maybe we will try one there. When you think about fundraising you always want to have double to triple profit, the margins on shirt sales are never that, it’s 20-30% at best. Sounds decent, but when you think about the time and effort to push the sales and create the shirts it’s not a great return per effort. However, they’re walking advertisement, reminders and families really like them. So we’re looking into our options now.

The major things will be to find sponsors and get our PR settled in the coming week. I am always so excited to see the new designs our resident artist (we call her our Bob Ross) comes up with. Megan Turcotte is a MA area mom of a gastroschisis little boy, Josh. I have known her for 6 years now, nearly within the first weeks of starting our social media campaign. Josh is incredible. He is a vanishing or closing gastroschisis survivor which is a very rare form of gastroschsis where the opening actually closes down cutting off circulation to the outside bowel from the inside bowel (this is the short hand version…there’s a lot more that happens as well). He has short gut or short bowel syndrome (SBS) because of it and has spent a good portion of his life either in the hospital or enduring very vigorous treatments. His mom, a passionate and artistic red head, has an incredible artistic eye. She’s devoted thousands of unpaid hours to us over 6 years creating an drawing our face, between working and taking care of her two boys. Josh’s smile is the best, I have called him “my smiley boy” for years now, perfect freckle faced ear to ear red-head grin that lights up the room. Between his mom’s passionate advocacy for his health and education, his endurance and their faithfulness to our efforts, they’re one of the many espresso shots in my “get up” everyday. The art Megan produces is not only brilliant because of it’s quality, it’s brilliant because her passion for both her son’s health and her passion for our mission guide it’s manifestation. It could not be a more perfect representation of what we do and who we are and we are so lucky to have her with us.

In other news, each year we file per state to have July 30th declared “Gastroschisis Awareness Day.” The effort started here in NC in 2010 by one of the other original “fire brands” Kayte Thomas who made a template of Proclamation form for others to use in their states as well (among the many other things Kayte has done for the effort!) Each year each state has to resubmit for the Proclamation (unless you know someone in the US Congress who can bring it to the floor for national approval…we’ve still not found our money tree yet so that’s not been possible, and the effort seemed a bit silly when we have much more pressing things on the agenda.) This year I made it a personal goal to see that we got all 50 filed. We have officially 48 and 10 states have already declared! California is the only one with a different filing program, it is identical to the National process, and we have not found a Ca senator amongst our Ca families who would take it (although I have heard rumors we may have one for next year!) The reason we had aimed for July for the mini conference was that it would be the same time as many of our national and international hubs would be celebrating awareness day/awareness month. It will be terrific as part of our presentation to also show how this fits into a national (and global) movement for awareness and advocacy.

This week I get to travel to Avery’s home hospital, UNC Chapel Hill Children’s Hospital, and present the Neonatologist who were over his care and my mentorship the Avery Award of Excellence. It’s not often I pull Founder or CEO status, but we have done the award for a couple years and when the cycle came up for neonatologists I could not pass up the opportunity to thank the team that directly impacted our movements and creation. Seeing as the idea for the conference was born there, as I mentioned before, I cannot wait to tell the team there about the plans and development. Maybe some day, and some day soon, it will be hosted in NC at one of our brilliant Children’s Hospitals here. That is the goal!

Decisions decisions decisions

Saturday, May 23, 2015 2:18 am

In NPO work you learn how to work with 0 budget. The point is to not drive money for your own personal use, but towards the mission. Hosting events kind of throws a monkey wrench in things. Event locations and vendors all make their bread and butter supplying things for events, and we make our money, not spending it on having events.

So here we are.

The event space in UT Houston is coming together (someone go knock on wood) but it’s a tricky process. We’re now looking at a $1000 budget to have the space, which we’ll have to raise immediately in sponsorships and fundraisers. The event must happen, it has to happen, so we’re going to find a way of covering the costs. (While also keeping our eye out for an equal or better deal…for free. Smart business people never stop looking for a good deal.)

To give you an idea of what our “normal” budget for a year looks like, it’s less than $23,000. Sure we could allocate $5000 to paying a grant writer, but that would mean we did not have that money to supply support and aide to families who have sick babies NOW. Nothing is worse than turning to a family who is actively bedside with their chronically ill child and facing all sorts of uncertainty and saying “Sorry, we just cannot help, we paid some person to get us money. Check back in 6 months to a year.” Doesn’t sit well with me and it’s not really conducive to our mission. I have made it a priority that we have made sure all pieces are in place to protect our interests as best we can so we have not had to pay a lawyer or any sort of consulting fee to keep all finances focused on what we do (all our volunteers are HIPAA certified, we have databases on everything and anything that comes to us, volunteer and leadership training which we redo each year…everything to keep all efforts concentrated on our mission- support, awareness and research). We did pay a grant writer $2000 about 3 years ago which garnered us $0. Never mind all the printing we did to send the forms, letters and information out. I know there’s a grant writer out there who would take the time, but they have to have the time and want to give that time to us. Which again, volunteering is the hardest work anyone does: It’s not paid, but it’s necessary, however your paid income is necessary to your survival. Fitting in the “volunteer job” is constant juggle of prioritizing, organization, time management and the effective use of “no.”

I digress. As soon as we get a better idea about what UT Houston is able and willing to do and their date, then we can really start pounding the pavement. The event should be simple enough once the space is confirmed. We already have confirmed BBQ boxed lunches so the incidentals will be the second part and getting the word out. Sometimes it feels like we’re moving at a speed that would scare a turtle, while the finish line keeps getting closer and closer. The Texas team, well specifically Brittany Isham our Houston leader, is really chomping at the bit ready to take off. Just the normal red tape and process of a University making sure we’re not doing anything radical that could possibly garner bad press….and trying to accommodate their own interests as well. I know that once the event has happened, the way we have visioned it, UT Houston will birth something that it will be extraordinarily proud of….and other institutions will follow.

Let’s get started!

Tuesday, May 19, 2015 1:32 am

So this summer I am trying to coordinate from a distance the creation and delivery of a mini conference or mini symposium on gastroschisis.

Waiiiit a minute! Say what?

Say ga-st-ro-ski-sis or gastroschisis. Which is a birth defect that currently affects 1 in 2229 babies born in the US and 1 in 2000 babies born in the world. I would know, my son, Avery, was born with the defect in 2009. While gastroschisis has an 80-90% success rate in the first world, my son passed away hugely unanticipated, after 107 days of life. At the time there was no formalized group or organization providing support, promoting research and awareness for gastroschisis, so I decided to plant the seed. 6 years later, Avery’s Angels Gastroschisis Foundation services families from Australia to the Philippines, 5 countries, 40 centralized hubs and over 4,000-6,000 families.

So fast forward to this summer.

Gastroschisis is a rare disorder, while the numbers are trending up without a definitive understanding as to causation and why (1 in 10,000 in 1990 and now 1 in 2229 in 2011) physicians are still limited to an o, 20-30 years worth of treatment understanding that has changed greatly over the past 10. Our survivors can do well, and some can do not so great, and the understandings as to what works and what works better could do with some better gleaning. Practice variation is a large portion of what our survivors confront, preferences for transplant, STEP, bowel rehabilitation, TPN, omegaven the list goes on. And to be sure there are “pro” and “con” on both sides. We need to understand what works, why it works, what doesn’t work, and why it doesn’t work so more children and adults have a shot of a healthier life.

Hence the mini conference. University of Texas at Houston, via Dr. Stacey Moore-Olufemi and Texas Children’s via Dr. Mary Brandt all but hunted me or our various Texas volunteers down wanting to provide the most current research and information being done at their facilities to the local physicians and families last year. Coupled with the epidemiological work of Dr. Mark Canfield from the Department of Health and Human Services, the National Birth Defect Prevention Network and the CDC who has also had a high interest in the risk factors and trends, we had the makings of an informative 4 hour session for families and practitioners who are involved in the gastroschisis world. My job is to make sure the event happens….and in a state that is…not close to me right now!

Fortunately Gastroschisis families have super heroes and are super heroes themselves. Right now my duties include:
• Coordinate communication for speakers, volunteers, attendees and media.
• Create budget for the event.
• Fundraise for event, contact donors, and write grants.
• Find and secure location. (We’re hoping for UT Houston!)
• Coordinate AV, chair and table rentals.
• Find vendors willing to donate or provide food and entertainment.
• Create event PR and program.
• Outreach to community for participation and support of the event.
• Reach intended audience of researchers, medical practitioners, patients and affected families for participation.
• Recruit volunteers for the event.
• Create social media and media campaign for spotlighting the event.
• Communicate updates with Avery’s Angels Gastroschisis Foundation current networks: NBDPN, NORD, MOD, Global Genes and the CDC as well as national Children’s Hospitals.
• Attend and coordinate the event day of.
• Follow up from event to local media and birth defect, neonatal and pediatric networks.
• Follow up and thank all participants, speakers and donors for the event.

Donations are going to be a huge component of how this event gets off the ground, so we will have area volunteers seeking sponsors. We have our 3 speakers and a program in place, we are waiting to hear back from UT Houston about the space and then we can proceed forward! I had a fantastic (and relieving!) conversation with our one of our Texas Leaders and point of communication for the event, Brittany Isham last week that food is covered. Just biting our nails on what will be UT Houston’s next steps….either July 11th, 18th or the 25th…and how much the fees will be…..then I will need to book a ticket.

We’ve also tentatively discussed volunteers and entertainment for the children who may be present with their families….crafts, maybe a face-painter and/or balloon artist. I know Texas likes to do it big, I also hope they like to give big too!

Until next time…the checklist continues….

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