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Facts N' Factors Newsletter| September 2016
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The
Trick or Trot 5K and Fun Walk is a healthy and fun event that the entire family can enjoy. Join us to run a 5K course, walk a quick one mile route, or cheer the kids in a Monster Dash, a 100 yard fun run for kids 12 and under. Funds raised will go toward fulfilling VHF's mission of supporting the needs of those impacted by a bleeding disorder through education, advocacy, and community.
5K/Fun Walk teams and costumes are highly encouraged and you won't want to miss the pre-race Halloween party with a DJ, food, prizes for best costumes, and more!
Date: Saturday, October 29, 2016
Time: Registration begins at 9:00 am | 5K/Walk begins at 10:30 am
Location: Robious Landing Park, 3800 James River Road, Midlothian, VA
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Upcoming Events Fall 2016
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Camp Youngblood at Camp Holiday Trails - Charlottesville
Ana Baggiano | Program Director at Camp Holiday Trails
As the last school supplies are purchased and children walk to bus stops for the first day of school, cookouts and pool days become fewer and farther between. The vibrant colors of friendship bracelets begin to fade as summer comes to an end, but the rich memories created by the 57 Campers at Camp Youngblood this past July live on.
Whether it's reaching the top of the climbing wall, embarking on a "fairy walk", or making a tie-dye tee, "firsts" happen every day during Camp Youngblood at
Camp Holiday Trails (CHT). Camp Holiday Trails, located in Charlottesville, has been providing camp experiences for children with special medical needs since 1973. Through their partnership with the Virginia Hemophilia Foundation (VHF) and the Hemophilia Association of the Capital Area (HACA), CHT provides an overnight week-long camp session for children in the bleeding disorder community aged 7 to 17.
While Camp Youngblood is full of traditional camp activities, such as horseback riding, canoeing and fishing, free swim in the pool, archery, and more, what truly makes camp special is the amazing community it provides. Camp's inclusive culture of acceptance and authenticity helps kids to feel safe while being their true selves, whether that be singing in front of camp at the Talent Show or wearing a costume all day "just because." This culture also allows children to better understand their diagnosis and teaches them that their condition does not define who they are. Camp's daily infusion clinic empowers campers to take ownership of their healthcare while supporting others who may be sticking themselves for the first time. At CHT, children learn how to feel better about themselves and their diagnosis.
On our final night of camp, "Golden Sticks" were awarded to campers who self-infused for their first time ever. After each camper received an award from their counselors, the camp community banded together to celebrate a week full of new friends, "firsts," community, and lifelong memories. The Closing Circle was full of tears as our oldest campers aged out of the program and as new friends realized it may be some time before they see each other again.
As we wrapped arms around one another in our traditional singing of "Lean on Me," Campers, Counselors, Volunteers, and Med Staff were reminded that the Camp community and support system it provides remains steadfast and strong, regardless if you are on camp's grounds or not. Knowing that they are loved and supported for being themselves, campers leave Camp ready to take on the world, or at least the first day of school...
Thank you to VHF and HACA for making another wonderful week of Camp Youngblood possible. We hope to see you next year at the Teen Retreat and Family Hemophilia Camp AND next summer at Camp Youngblood. Have a wonderful fall semester from your friends at CHT - we'll be thinking about you!
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Teen Education and Advocacy Event - Richmond
On Saturday, August 6th twelve
teens gathered in Richmond to meet one-on-one with rising stars in the civil service
sector, learn more about integrating advocacy and social media from Hemophilia Federation of America's Advocacy Outreach Manager Sarah Shrinkman, have a guided tour of the VA capitol building, and then indoor rock climbing with dinner! Our facilitator, Megan Shifflett, UVA-HTC Educational Consultant, kept the day running smoothly and helped to ensure that learning happened all while having a great time.
Attendee Rachel Morrison had this to say "I am so grateful that VHF held an awesome event at the state capital. It was very awesome to have professional speakers come and talk to us about their day to day duties
working for the government. They talked to us about the Senate and House Page Program, which inspired me to apply! On the tour I learned that Pocahontas was called Rebecca Rolfe by King James the 3rd, and her name was originally Matoaka at birth. I was also told by the tour guide that the columns were made out of tree trunks which I thought was incredibly awesome."
Thank you to our sponsors Baxalta, CSL Behring, Hemophilia Federation of America, and Novo Nordisk.
Go here for more event photos.
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Celebrate Summer Community Event - Richmond
Deb Peluso | VHF Member
Sunday, August 7th was a lovely morning filled with blue skies and great friends from the bleeding disorders community! We gathered together to Celebrate Summer on Browns Island by the James River and absolutely loved this event. It was our first time and as always, loved being able to see old friends and meet some new ones. We had an amazing time canoeing with Riverside Outfitters and the kids loved the rope swing, of course. The guys really enjoyed getting a workout on the bike trails. We love the outdoors and being active so this was a perfect event for our family!
Thank you to our sponsors Baxalta, Bayer, DrugCo Health, and Novo Nordisk.
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Educational Dinner - Chesapeake
Megan Midura| Social Worker CHKD
Conversation was key at the Educational Dinner at Cutlass Grille in Chesapeake. Those in attendance learned about constructive conversations over some delicious Jamaican Jerk Barbecue, and gained an understanding of how motivational interviewing helps you to interact with caregivers and health care providers. The food and company were wonderful, but the food was so good that dinner was quite quiet! Thank you to our sponsor Pfizer.
Make sure to join us for our educational dinners this fall located throughout the state:
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- October 6th, Virginia Beach, "Communicate with Your Child's School" Go here to RSVP
- November 10th, Harrisonburg, "Being More Active With Hemophilia" Go here to RSVP
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Back to School Picnic at Ocean Breeze - Virginia Beach
Sarahbeth Spasojevich| VHF Board Member
Nearly 100 VHF members came out on Saturday, August 27th for back to school resources, a picnic lunch, and a sunny, water-filled day at Ocean Breeze Waterpark in Virginia Beach. A big thank you to our Medical Resource Committee for developing great handouts for our members to share with their school's healthcare provider. Not only did our members receive quality education but they also had an action packed day since swimming is recognized as a great way for those with bleeding
disorders
to stay fit and protect joints. This was a great experience to "practice" and have some family fun!
Thanks to Baxalta, HPC Specialty Pharmacy, and Novo Nordisk who sponsored this community event.
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Community News and Articles
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2016 NHF Inhibitor Education Summit
Amy Walker | VHF Member
Our family has been blessed to go for several years to the
National Hemophilia Foundation (NHF) Inhibitor Education Summit
. In August we went to St Louis for our 12th year of the summits. The inhibitor community truly feels like our family and we look forward to going and learning from experts and other families going through similar situations.
Topics vary from year to year, but this year we learned several new and hopeful things that will impact how we treat inhibitors in the future. A session by Dr. Tarantino and Dr. Kruse-Jarres discussed the pros and cons of ACE-910, a bi-specific antibody that will act like FVIII and bind FIX and FX together. Currently in clinical trials, this new drug is a subcutaneous injection given weekly that promises to raise FVIII to a preventative level. Inhibitors are directly related to the immune system and we learned that Dr. Meeks is studying these antibodies and mapping where they are attaching to the FVIII. This information will hopefully help to figure out how inhibitors act, how many types exist, and how they can change over time.
We went to a session where Dr. Kruse-Jarres and Bruno Steiner, PT were showing the audience how they are using ultrasound at their HTC in Seattle, WA to look at joints and muscles to determine if the pain the patient is experiencing is truly a bleed or is pain related to joint damage or other related injury. Ultrasound is advantageous over other imaging techniques because it is safer with no radiation exposure and potentially faster availability to imaging.
Another session focused on new research by Dr. Sidionio on carriers is studying bleeding effects he found that carriers are also susceptible to joint bleeds and can lead to joint damage especially for those that have the lowest factor levels. His research shows that carriers also report bleeding issues much more frequently than other women who are not carriers. Dental care was a hot topic and great oral hygiene should be of great importance to those with bleeding disorders taking care to have hematology and dentistry collaborate together to form a treatment plan for dental work. Dr. Schaffer stated that orthodontics are also encouraged as needed for healthier teeth and while having braces on lots of wax is recommended to prevent bleeding from broken wires and bracket.
In the teen sessions, the topics included: music therapy, social media concerns, and dealing with anger and rap sessions where the teens can talk about what is going on related to their bleeding disorder. Younger kids enjoyed kid camp where they had a fun trip to the science museum and talent show to cap off the entertaining weekend. Dealing with an inhibitor is difficult, however knowing there is support and community at the summits continue to assist families in many ways. The most enjoyable part of the summit is the lifelong friendships that are made and renewed by encouraging each other in our hemophilia and inhibitors journey.
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Hemophilia carriers are at risk for abnormal bleeding
August 27, 2016 - Orlando, FL
The traditional view that women who are hemophilia carriers are unaffected by the disease may not be accurate, because many hemophilia carriers experience abnormal bleeding, a hemophilia specialist contends.
"We do know that hemophilia carriers have increased bleeding scores compared to controls," said Michelle Sholzberg, MD, a hematologist and medical director of the coagulation laboratory at St. Michael's Hospital in Toronto.
Bleeding in carriers is predominantly mucocutaneous bleeding, and may include epistaxis, heavy menstrual bleeding, bleeding with interventional procedures, and postpartum hemorrhage, she said at the World Federation of Hemophilia World Congress.
The majority of women who carry a factor VIII or factor IX mutation on one X chromosome have factor levels ranging from 0.40 to 0.60 IU/mL, which are generally considered to be adequate for hemostasis.
Yet, "we know that many carriers bleed, and in fact there are carriers who bleed with higher factor levels that are truly in the normal range," Dr. Sholzberg said.
Normal coagulation factor levels in the general population range from about 0.50 to 1.50 IU/mL. By this standard, approximately 30% of hemophilia carriers have low factor levels, she said.
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Earn Money for VHF with AmazonSmile!
Monika Eiden | VHF Board Member
I LOVE Amazon. Amazon takes care of all my needs: home and beauty products, clothes, electronics, birthday and Christmas gifts, and now diapers for my 6 month old son. You name it, I get it from Amazon. But now, I LOVE Amazon even more since it allows me to also support VHF every time I shop, at no additional cost to me through AmazonSmile.
When you shop at smile.amazon.com, you'll find the exact same low prices and convenient shopping experience as Amazon.com, with the added bonus that Amazon will donate 0.5% of the purchase price from your eligible purchases to your favorite charitable organization. How great is that?! Not only you are buying the things you need or want but you are also supporting VHF! If you didn't know about this service, now you know. Go ahead and support your favorite organization! It's that simple!
Share this link
:
http://smile.amazon.com/ch/54-1183181
and ask your donors, volunteers, employees, and friends to bookmark this link so all their eligible shopping will benefit United Virginia Chapter of the National Hemophilia Foundation.
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2016 World Federation of Hemophilia Congress
Melinda Nolte, RN | Bleeding Disorders Nurse Consultant VCU - HTC
It was a very exciting experience for me for different reasons. One of the reasons was evident from the moment I entered the conference center in Orlando where the meeting was being held. I was immediately surrounded by people from many different ethnic backgrounds and cultures speaking many different languages, all connected in some way to bleeding disorders. What an opportunity this presented to gain information and insight into the world of bleeding disorders from so many different perspectives! The presentations were very exciting to hear, covering information and ongoing research related to current treatments for hemophilia and also information about cutting edge research related to new treatment possibilities for hemophilia. All this information was presented to an audience that included people from countries that had great access to medical care and countries that struggled to provide the bare minimum of care to the bleeding disorders community. It made me realize how lucky we are to live and work in a country that allows us access to the most up to date treatments available.
The information presented at this conference covered a wide variety of topics including how best to prevent and treat bleeds with the current factor products available and what is on the horizon in terms of newer treatments for hemophilia. Some of the most exciting information presented related to newer treatments for hemophilia in the early stages of development that would benefit people with and without inhibitors. These new possible treatments included gene therapy that has the potential to raise someone's factor level above their normal baseline with one treatment! There was also discussion about von Willebrand Disease and how to best diagnosis this bleeding disorder. Some of the presentations talked about women with bleeding disorders and how to best manage their unique bleeding problems, with experts in the OB/GYN field sharing their knowledge. Orthopedic surgeons presented research about ways to decrease the risk of infections related to joint surgeries. Exciting information was also shared about the newer hepatitis C treatments that are now available that have greatly improved the outcome of this treatment. I was excited to take back a lot of this information and share with our center staff. We will continue to have ongoing discussions with our patients, using the newest information available to make the best treatment decisions for each person we provide care for.
As I said, I felt very lucky after attending this meeting, to live in a country where patients with bleeding disorders have access to the best treatments available. There is hope for people in underdeveloped countries however, with programs such as the WFH Humanitarian Aid Program that presented their vision of being able to provide 500 million units of donated hemophilia factor to underdeveloped countries in the next 4 years. This would be as life-changing to some as successful gene therapy would be to people in this country! It is all about what side of the world's window you are looking out from!
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Upcoming Events Fall 2016
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