Bi-Annual Update of Sickle Cell Warriors™

Hello Warrior Family this is our bi-annual update!

This bi-annual update letter is a year late but I finally finished it. Apologies for the delay. Read on and you will see why…

It’s been a while since I last penned an article on here. Thank you so much to everyone that has emailed, texted, called, and posted looking for yours truly. It’s truly been a crazy and hectic time in my life, and Sickle Cell Warriors™ is not exception. So where do I start with this bi-annual update …how about, since the last time we spoke? I’m going to highlight some of the wonderful things that SCW has been able to accomplish and participate in this year as well as my personal challenges and triumphs.

FDA Meeting

To start off the bi-annual update, Kiea and I both went to D.C. for the FDA meeting. It was amazing how many people attended. One of the organizers told us that of all the Public Meetings for Rare Diseases that they had done, Sickle Cell had the highest number of participants, both in person (200+) and online. There were so many insights received from that avenue. Most of the sickle cell advocates who came up for this meeting ended up around or in the same hotel. SCW attended and joined the Sickle Cell Consortium. This is a coalition of sickle cell advocates who have banded together to achieve more together than apart. I loved the unity and forward thinking here, and was delighted to meet so many advocates in person that I hadn’t had the chance to meet; Velvet, Niki, WDC, Tina just to name a few.

Open Comment Process

Once we got back from the FDA meeting in February, SCW was in full swing trying to get everyone to participate during the open comment process. This was our chance as a community to talk back directly to the FDA on what new treatments and research we most desperately want and need. We initially had such slow response that we had to contact the FDA to extend the commenting period (which they graciously did). For those of you that tried several times to get your comment across when the platform was not working…thank you so much for trying again and again.

Also a big thanks to the good folks at Genetic Alliance and the other advocacy organizations who participated in the PERS system. Together, we were able to submit a collated summary report from the entire SC community. Sickle Cell Warriors also sent in a comment from the organization (which was created and drafted from most of the input gleaned during the debates we had back then). That took us into the first week of April.

Foundation for Sickle Cell Disease Research (FSCDR) conference

In April, I attended the Foundation for Sickle Cell Disease Research (FSCDR) conference, where I was able to learn about the latest in sickle cell research. Also spent a wonderful evening with some Miami warriors, and guests who came out for the Sickle Cell Encouragement Party organized by Dominque Friend. That was truly a spectacular event, and if you ever get a chance to attend one of these parties…definitely go. Nothing beats being in a room of people who get you and support you 100%!

SCW™ Annual Sickle Cell Gathering

We kicked the planning for the SCW™ Annual Sickle Cell Gathering into high gear, which meant that we had to put the Advocacy Training class on the back burner (sorry again to everyone that registered). In the meantime, I was traveling with my job, and had a great opportunity to hang out locally for One Night Only at popup Warrior Meetups in Chicago, Detroit, and Los Angeles (pix on FB page). It was so fun to actually put names to faces an connect with Warriors across the country in person. Thank you to everyone that came out and spent time with me. Had such a blast and I’m looking forward to seeing you all again soon.

We had to orient the first batch of new ambassadors for SCW. Ambassadors are nominated Sickle Cell Warriors, who have shown great aptitude, passion, ability, and dedication in sickle cell advocacy. From our first group, we now have established Ambassadors, who are able to participate on a local or state level and represent Sickle Cell Warriors™ as an advocate. Congratulations to Bill C. from NJ, Connella G. for IL, James Beavers for IN, Mia R for GA, and Kennett J. for Southern CA who are currently active Ambassadors and worthy representatives of SCW. We also had our flagship university annex founded by Kemi T., the Sickle Cell Warrior Gators at University of Florida!

Transitions

May was intense. We had a couple of our core volunteers transition into other work arenas, and that left us desperately shorthanded, with a huge event looming. There was just so much to do, and not enough helpers. Both Lakiea and I had to call in the cavalry aka our families, who really were the ones that helped to push the Gathering to the next level. When you check out the pix, you will see lots of happy, smiling faces. Anyone who looked intense or stressed…was probably either my sister Busayo, Kiea’s cousin Angie, her mom Doris, or my hubby Orion.

June, it was crunch time. I probably got a gazillion emails that were super late in responding. SCW was selected to join the Rare Disease Coalition in NJ, through the amazing work of our state ambassador, Bill Cummings. We really spent the entire month planning and organizing for the Gathering in July.

2nd Annual Sickle Cell Gathering and Educational Symposium

The 2nd Annual Sickle Cell Gathering and Educational Symposium was held in Atlanta mid-July (which is probably going to be our de-facto time here on out!). It was such a wonderful time and we had over 100 attendees! The banquet was exceptional, and we are so grateful to everyone who took time out of their lives to attend, participate, and spent their money to come! I know we promised at our closing meeting that we will be doing another Gathering in 2015—but here comes the kicker.

In August, I was put on bedrest for my twin pregnancy. The boys were not letting mama do anything besides eat, sleep and sleep some more. I was still trying to juggle school and work, barely hanging on by a thread! Thank you so much for everyone who showed us some love. Fortunately, Tiffany (our new social media moderator) had fully taken over the reigns and was able to keep the sites going to a limited extent.

Usually we start planning the next year’s Gathering in September, but even though we wanted to put together the cruise as promised, we were just so fatigued. Me from creating 2 human beings, and Kiea from #DoingTooMuch–(yes, I said it!)

HIATUS

In October, Kiea and I both had significant health challenges, and we took an official HIATUS! We haven’t ever taken a long break since the organization got into its full swing, but we needed it! I was hospitalized for 64 days (whew!). Kiea was in and out of the hospital for about the same amount of time.

The New Year kicked in. We were still dealing with the challenges of our health, energy, time, and finances, when whoosh. The babies came out! That is exactly how it seemed. I promise to dedicate a post specifically to the whole pregnancy, labor & delivery with sickle cell experience. May be TMI for the vast majority. Anyway, suffice to say, I was in labor and didn’t even know it. I was at home for 10 hours [in labor], wondering why I kept having this ‘urge to pee’ all night long. It’s true, sickle cell pain is 10x more painful than freakin’ labor! Labor—that was so easy!

Twins are Here

Adding to the bi-annual update: The twins are officially here. Switching from the Warrior hat to the Mommy hat took all the energy I had. I sincerely apologize to everyone who didn’t hear from me as I was effectively radio silent for 6 months. I was trying to figure out how to take care of these two little beings who all of a sudden rely on me for every single thing! God made babies cute! That is so they could survive those first few months when parents aren’t getting any sleep, food, or sense of reality.

So now the twins are older. They still aren’t sleeping through the night. But at least I can bounce one with my foot, feed one, and dictate into my phone to type this. Many of you have seen Kiea out and about at every single sickle cell event this year. As well as Tiffany manning the boards. The hiatus is officially over and SCW is back in full effect.

In February/March, along with me heading back to work, we collaborated with other SC advocates. We want to encourage the FDA to include sickle cell disease in the Pediatric Priority Review Voucher program. Read about that HERE.

In April, we participated in the NHLBI/NIH stakeholders listening session and attended their June conference. Thanks to all the warriors that helped us join the Strategic Envisioning process! And thanks for all the suggested research priorities for the NHLBI to focus on with SCD. NHLBI collated the information they received (over 1,000 suggestions), and will get back to us with the strategic plan.

Next up?

Putting together our planning committee for the 2016 Gathering
Re-instating the Advocacy Training class
September is Sickle Cell Disease Month
Getting our Warriors back in action on all fronts to advance sickle cell education, awareness, and empowerment

Stay tuned for another bi-annual update!

Join Us as we continue to build a better and more active sickle cell advocacy organization.