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Facts N' Factors Newsletter| August 2016
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Back to School with Bleeding Disorders
Kelly B. Cartwright, PhD.| VHF Board Member and mom to a child with hemophilia
It's hard to believe, but as I write this piece in mid-July, school supplies have already hit the store shelves! Although we are still in "summer fun" mode, it's almost time to head back to school. Beginning a new school year can be both exciting and worrisome for students with bleeding disorders and their families. A new year brings new teachers, new peers, and new school staff, most of whom may have little knowledge about bleeding disorders. What can we do to make the transition easier? Communicate with teachers, school nurses, and school staff; invite the HTC staff to visit our children's schools to share information; and continue to work to educate school nurses, teachers, and staff about bleeding disorders when appropriate, so that we can be the best advocates for our children. We should also be familiar with the various resources and plans available to protect and support our children in school. This article provides a few pointers and resources that may be helpful in this process.VHF's Medical Resources Committee is hard at work compiling additional resources to share, and many of these should be available by the time school starts in September.
Children with bleeding disorders, particularly those with severe conditions, may sometimes need adjustments, or accommodations, to keep them safe and ensure that they have the same access to school experiences as their peers without bleeding disorders. See the Hemophilia Federation of America's
(HFA's) List of Possible Accommodations for Students with a Bleeding Disorder
.
For example, accommodations may be made to
- School Policies (e.g., attendance policies, by not counting absences related to the bleeding disorder against the student),
- Procedures (e.g., adjusting recess supervision),
- Practices (e.g., adjusting field trip protocols to include a parent or school nurse and a dose of factor), or
- Instruction (e.g. providing adaptive PE when children are recovering from bleeds).
Those kinds of adjustments are typically covered under Section 504 Plans (usually called 504s) or Individualized Education Plans (usually called IEPs). School Nurses also develop Individualized Healthcare Plans (IHPs) that outline nursing care to be provided if a health-related event occurs at school. IHPs are usually included in 504 Plans or IEPs as part of the bigger picture of caring for a child with a bleeding disorder in a school setting. Descriptions of each of these plans follow.
- Individualized Education Programs (IEPs):outline special education services and supports when learning is affected by a student's condition. IEPs protect students and provide access to learning experiences comparable to peers. Students with hemophilia may not need IEPs unless learning is affected.
- Individualized Healthcare Plans (IHPs): IHPs are nursing documents that outline specific steps nurses should take to care for health-related events that occur at school, like nosebleeds or joint bleeds. IHPs are designed to protect the school nurse (see information on Individualized Health Care Plans from the Virginia Department of Education). IHPs are appropriate for all students with hemophilia.
- Section 504 Accommodation Plans (504 Plans or 504s): 504s protect students and outline adjustments to school practices, policies, and procedures to "level the playing field" so students have safe access to academic and non-academic experiences comparable to peers. 504s are appropriate for students with hemophilia, particularly those with severe conditions. Work with your HTC and child's school to determine whether accommodations under a Section 504 Plan would be appropriate for your student.
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NEW THIS YEAR: WE HAVE ADDED A WALK TO THIS FUNDRAISING EVENT! The walk is open to all ages so enlist a Team Captain, choose a Team name and recruit team members from your circle of friends, family, co-workers and neighbors.
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 August and September 2016
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Terry Lamb Batter Up Community Event - Norfolk
"The Terry Lamb Batter Up Event was well attended by over 20 families on a hot afternoon on Saturday, June 4th where the Norfolk Tides faced the Pawtucket Red Sox. The families enjoyed dinner and an interesting talk by Pete Dyson from CSL Behring's Gettin' in the Game program and even had a special surprise visit from the Norfolk Tides first baseman, Trey Mancini. Although the Tides fell to the Red Sox, the event was a success and lots of fun was had!" - Megan Midura | Social Worker CHKD-HTC
"This years event was a blast! I had so much fun. I saw friends and I even got a ball signed. We ate great food and listened to stories about interesting life experiences. Then went to watch an exciting game and walked around and won some really cool stuff. I got to go down to the field and get my ball signed again by the mascot. It was funny because his nose made a squeaky noise. It was a great experience and I can't wait for next year." -
Jazmine Bolton | VHF Member
"This was our family's 2nd year attending the Batter Up Event. As a parent of a 1st generation hemophiliac, it's an amazing opportunity to talk with adult athletes who've grown up and thrived while managing their bleeding disorder. They extend the boundaries of what we're told is possible for our child. It means the world to us as parents and meanwhile it's a fun adventure for our kids. Thank you." -
Kaui MacDonald Porche | VHF Member
Thank you to our sponsors CSL Behring and MedPro RX, a Diplomat Company.
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VHF Annual Education Meeting - Charlottesville
Sara Rakestraw | VHF Board Member
On June 17-18, at the Doubletree by Hilton in Charlottesville, we
came together to hear about the best in education and supportive services for our families affected by bleeding disorders. This event was packed full of exciting medical updates, relevant workshops, peer support, and fun!
We started on Friday with a dinner celebration along with a fun, fact-filled game of Jeopardy hosted by NHF's Felix
Olaya
.
Saturday, the educational day, was full of wonderful presentations and plenty of time to meet others affected by bleeding disorders (some making new friends and some embracing life-long friends). Back by popular demand was Henry Mead
, Medical Therapeutic Area Lead-Coagulation, who shared with us many new and exciting medical updates. We also had a dynamic presentation and conversation regarding the changes in the cost of medications, health insurances and copay assistance programs from our panelists Michelle Rice with NHF and Dr. Edmund Pezalla with Aetna.
The afternoon consisted of our break-out sessions, which provided a time to share relevant information and support for women and men, as well as learning how to take control of our care. Our final session ended with Dr. Christopher Walsh talking about pain management. Special thanks goes out to all of our speakers for sharing their knowledge and expertise!
While our adults spent time together learning and sharing, our older kids attended Camp Holiday Trails. This day of camp provided our kids some crazy fun learning experiences and a day full of connecting with their peers
.
We also had some wonderful exhibits during this event. Opportunities for one-to-one conversation and the progressive exhibit format allowed time to learn more about the exhibitors, which included manufacturers and specialty pharmacies with treatment therapies and services.
This event was just a wonderful time of learning, sharing time together, eating great food and having fun!
This event was made possible in-part because our generous sponsors!
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Educational Dinner - Winchester
Crystal Boehmer | VHF Member
My family and I recently attended an educational dinner in Winchester on June 30th and the topic was Dental Care. We love attending Virginia Hemophilia Foundation events to have the interaction with other members who may be experiencing similar challenges. During the dinner we were able to get helpful information and reminders of how important dental care is and how big of an impact it can have on someone with a bleeding disorder. We also had the opportunity to discuss different experiences we each had and different strategies for managing bleeds after dental procedures like tea bags after extractions. The meal was delicious and the kids loved sharing their own experiences and dental care habits. We are very thankful to have such a wonderful group of individuals to share this journey with. We are also very thankful to dinner sponsor Baxalta for sponsoring events like this.
Go here for more event photos.
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VHF Educational Scholarship Winner | NHF Meeting Wrap-up
Johnson Family| VHF Members
"It was a great time when we went to Orlando, FL. We had fun at the annual meeting. While there we could do some fun stuff. At child care we went to the Crayola Creation Factory at the mall and we rode on a bus. When we got there we made a crayon and named it. Mine was green. I met new friends named Aiden, Autumn and Gianna. When we came back to VA it was so hot - it was like 100 degrees. And we saw our aunts and uncles and cousins." - Jacob
"My time at NHF was a lot of fun; it was also a life learning experience. I met other kids with hemophilia from all over the country. I have also learned about several other treatments for type A hemophilia. The speakers for the sessions gave adequate arguments whenever they were questioned. I participated in the teen track at NHF and it gave me new insight on how to look at hemophilia. Some of the apps they presented on the track were about how to stay healthy and take care of oneself, including tracking infusions and bleeds. We also learned about a group called NYLI (National Youth Leaders Institute) a part of the National Hemophilia Foundation that travel the country to teach young adults and teens how to advocate for themselves and other essential needs to prepare for getting older. The stories that I heard from older generations and from kids my age were amazing. I learned about areas that don't even have a chapter or community of fellow hemophiliacs near them. I feel like I am so lucky and blessed to know other people that have hemophilia and that I have so many friends that have bleeding disorders. I am thankful for the Chapter and HTC for giving me an opportunity to meet my new friends and learn about the struggles and victories over hemophilia!" - Soren
"Sometimes it's hard to understand, no matter the physical or mild workout, that a severe hemophiliac will still bleed. You can do yoga, stretch, lift weights; it all works the same muscle and may bleed. Encountering many other young men and teens with hemophilia A severe at NHF's Annual Meeting and knowing that the real key to your workout or sport is prophy and ice - prophy on days of practice and ice every time even if it doesn't hurt. My kids are active in basketball, track, bike riding and swimming. To get them stronger and faster, it's best to use only the natural weight of their body and do more reps and ice each day along with prophy. This is important to that healthy life style that we want and need for our kids. Thank you for the opportunity to catch up on these changes and have better insight and control over quality of life." - James
"This year's National Hemophilia Foundation (NHF) Annual Meeting was held in Orlando, FL and this particular year was amazing because we had the opportunity to meet people from all over the country (and world). We met those with bleeding disorders young and old, providers and pioneers - all for the cause of educating and advocating for those that have a bleeding disorder. Learning from the different perspectives and learning about advancements makes me even more appreciative of where we've come from and so hopeful for the future.
What was also amazing was that Virginia Hemophilia Foundation (VHF) was recognized in many ways. VHF was acknowledged for our donation to World Federation of Hemophilia. Also one of our teens, Soren Johnson, was nominated and received an Impact Award for Service and Volunteerism. Particularly exciting was that VHF received the NHF Chapter of Excellence Award in 4 out 5 areas. VHF scored in the top 15% of all Chapters reviewed in the areas of Advocacy and Public Policy, Program and Service, Board Governance and Leadership, and NHF Partnership. What an accomplishment! As a winner VHF will receive several rewards such as a monetary award for programming, access to board development resources, a travel scholarship to the 2017 NHF Annual meeting in Chicago, acknowledgment in Hemaware and NHF's quarterly Update (October 2016), as well as on the NHF website. The certificates will be on display in the office. So come on by and show your appreciation to Kelly, Heather, Melissa and our Board of Directors for their commitment and dedication to the people living with bleeding disorders.
With so many advancements in the works for our bleeding disorder community's future, I remain hopeful and grateful for those that are advocating and fighting for our families and friends and that means you! It humbles me and reinvigorates an energy within me to continue our cause and be that resource for those living with, loving and supporting someone with a bleeding disorder including those affected around the world. It is so important to know that you are not alone, we're here together."
- Murai | VHF Board President
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NHF Annual Meeting Scholarship Winner | NHF Meeting Wrap-up
Faith Winstead | VHF Member
Hi friends!
We just returned from our first NHF annual meeting in sunny (and very hot) Orlando. We are just getting to know a lot of you, so if you haven't met us yet, my name is Faith Winstead, and my husband and I adopted a two year old boy from China last November. His name is Shaw, and he has severe hemophilia B. Several months ago, I wrote an essay about Shaw's life, and sent it off to VHF and NHF requesting a scholarship to the meeting, and I was very excited to hear that we had received scholarships from both organizations! VHF covered our meeting registrations and NHF's Connections for Learning Grant program covered the rest.
I'd like to tell you a bit about the conference, but first I want you all to know that NHF has greatly increased its Connections for Learning Grant program, and I'd encourage you to apply for the 2017 meeting which will be held in Chicago. When we met with the room full of families who received grants this year, the review committee stressed that they really want to help people get to the conference-including people who have previously attended. If you need any help figuring out the application process, or even if you need help getting started with the essay, feel free to contact me.
Our experience in Orlando was awesome! We arrived at our hotel-the Gaylord Palms Resort and Convention Center, and checked in for the weekend. At the registration area, we received our schedule of events and some swag which included a bag to tote all of the papers that we received during the presentations. NHF even had its own app to help us navigate the hotel, and set up our schedule so that we wouldn't miss a thing. Because Shaw is so little, and because he's still adjusting to life with us, Keith and I alternated between parent duty and attending classes. Shaw was able to enjoy visiting with all of the pharmaceutical companies in the exhibit hall (free toys!), searching for alligators and fish in the indoor garden area, and lots of swimming in the pool. NHF also offered childcare, and we will definitely be taking them up on it next year!
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Community News and Articles
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Voluntary Recalls Issued for 4 Lots of Recombinant Clotting Factor Products
Voluntary Recall Issued for 2 Lots of Kogenate FS
Bayer has announced a voluntary recall of two lots of Kogenate FS with vial adapter. The two lots of 2,000 IUs contain active ingredient manufactured before November 2015. Recent stability testing revealed a loss of potency to below pre-specified acceptable levels. The lot numbers involved are:
- Lot # 270TN1C
- Lot # 270R978
This is not an issue of safety of the product. Any outstanding vials of these two lots will be replaced at no cost. For further information or to arrange for an exchange, please call the Recall Processing Center at 855-838-5782.
Voluntary Recall Issued for 2 Lots of Helixate FS
CSL Behring has announced a voluntary recall of two lots of Helixate FS with vial adapter. The two lots of 2,000 IUs contain active ingredient manufactured before November 2015. Recent stability testing revealed a loss of potency to below pre-specified acceptable levels. The lot numbers are listed below.
This is not an issue of safety of the product. Any outstanding vials of these two lots will be replaced at no cost. For further information or to arrange for an exchange, please contact the CSL Behring Customer Service at 1-800-683-1288 or customersupport@cslbehring.com.
CSL Behring has engaged the Patient Notification System to notify all registrants and is notifying customers.
When a recall or withdrawal is announced, each manufacturer and supplier has their own internal process for notifying pharmacies, clinicians, and patients. However, for patients with bleeding disorders, there is another resource that will alert you directly in the event of a product recall or withdrawal: the Patient Notification System (PNS).
PNS is a fast, free, and confidential program that alerts patients with hemophilia, von Willebrand Disease, and other bleeding disorders of a withdrawal or recall of therapy products. All major plasma-derived and recombinant analog therapy manufacturers participate in this system.
If a therapy is withdrawn or recalled, the system notifies those registered for the therapy in question within 24 hours. Patients can choose to be contacted via email, telephone, or fax, and are also sent a letter via first-class mail to ensure receipt of the notice.
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Your Board of Directors
Each year at our annual education meeting you may have noticed that we call upon you to cast your vote for both new and returning members for our board of directors Go here to view this year's Board of Directors election document. The board of directors
is the governing body of VHF
. The officers and directors who sit on the
board
are responsible for overseeing the foundation's activities and
members
meet quarterly to discuss and vote on the affairs of VHF. The board works to clearly articulate VHF's mission, accomplishments, and goals to the public and garner support from the bleeding disorders community and the community at large.
As an example of what boards do here is the list of "Ten Basic Responsibilities of Nonprofit Boards" from
BoardSource:
- Determine the organization's mission and purposes
- Select the executive staff through an appropriate process
- Provide ongoing support and guidance for the executive; review his/her performance
- Ensure effective organizational planning
- Ensure adequate resources
- Manage resources effectively (the buck stops with them, ultimately)
- Determine and monitor the organization's programs and services
- Enhance the organization's public image
- Serve as a court of appeal for unresolved issues or complaints
- Assess its own performance
Go HERE to see our 2016-2017 board members. If you have not had a chance to meet all of our board members make sure you introduce yourself at the next event, they look forward to meeting you!
- If you have any questions about the board please contact Kelly Waters (Executive Director) or Murai Johnson (Board President) at 804-740-8643 or
info@vahemophilia.org.
Meet Our Newest Board Member
 Sarahbeth Spasojevich - Sarahbeth's family has been active in the VHF community throughout her son's childhood -- and she is passionate about minimizing the negatives of the disease by building community support and programs for families. Her son, two brothers, and grandfather have hemophilia A. She is a military writing instructor for soldiers, and has taught college composition for the last 15 years. She received her MBA from Regis and her MA in English from VCU. She has served on the wine tasting committee and is looking forward to expanding her involvement with VHF.
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New Online Resource
Betteryouknow.org is a website for women and men who may experience symptoms of a bleeding disorder but have not been diagnosed. With this site, the
National Hemophilia Foundation (NHF) hopes to raise awareness and knowledge of bleeding disorders as part of their Better You Know campaign. Throughout the site you'll find a risk assessment, tools, and other information to learn whether you are at risk for a bleeding disorder and the next steps you can take to seek care.
Please note the risk assessment tools are in no way a substitute for a diagnosis from a qualified medical provider, and the information on this site is provided for your general information only
(please see NHF's full Medical Disclaimer).
If you already know you have a bleeding disorder and are looking for even more information about bleeding disorders and living fully with one, please visit NHF's other resources:
- Steps For Living - NHF's resource living with a bleeding disorder at every life stage
- Victory for Women - NHF's space for women with bleeding disorders to connect and share
- HANDI - NHF's Information Resource Center
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VCU is Now Participating in My Life, Our Future
Lauren Dunn | Social Worker VCU - HTC
VCU is now participating in My Life, Our Future (MLOF). This initiative offers no cost genetic testing to people with hemophilia who are seen in HTC's throughout the country. My Life, Our Future is a partnership of ATHN, NHF, Puget Sound Blood Center (PSBC), and Biogen. It is designed to help uncover genetic information that can be used by physicians to individualize the care of people with hemophilia, as well as generate data that may lead to new scientific discoveries. More information about participating in MLOF is available during clinic appointments or by contacting the HTC at VCU.
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VHF 2016 Lyman Fisher Scholarship Winners
 This upcoming fall, I will be attending George Mason University in Fairfax, Virginia. I will be majoring in Biology. During my time at GMU I also plan to do internships in my field of study and participate in a study abroad program. After graduating from GMU, I plan to attend either medical school or veterinary school. If I attend medical school, I intend to become a pediatrician. If I attend veterinary school, I intend to become a large animal or zoo veterinarian. I am extremely honored to have received the Lyman Fisher Scholarship! It will be very beneficial in helping me pay to further my education. It also means a lot to me to have received it from the Virginia Hemophilia Foundation, which has played a major role in my life since I was a child! Thank you so much for providing me with this scholarship and for supporting me in the continuation of my education! - Patti Williford | VHF Member
 I graduated from Hickory High School in Chesapeake, Virginia this year and will be attending James Madison University this fall. I will study Chemistry with an interest in pursuing a career in the medical field with an advance degree in pharmacy. Ever since I was diagnosed with hemophilia A as an infant, my parents and I have been active in the hemophilia community. Growing up with hemophilia I have been surrounded by many health care professionals. This support of health care, education, and collaboration has greatly reduced the impact of hemophilia on my life.
This spirit of care has instilled a sense of philanthropy in my life. I have served for 2 years as the president of Magnus Fraternus, a service organization; president of the Student Ambassadors, volunteered at kitchens and food drives for the needy, and volunteered at CHKD in Surgery, Pectus, and Pharmacy. My family has been involved with the First Step program and many VHF events over the years. I look forward to increasing my participation in the future.
In addition to the academic requirements for pharmacy, I think a good pharmacist requires an ability to communicate with all types of people. But, foremost, I believe that a career in the medical filed requires compassion and understanding for those who are ill and require treatment. I think having Hemophilia has made me more aware of the compassion that people with disabilities require since I understand the hardships with living with a chronic medical condition.
Thank you for the privilege to be the recipient of the VHF Lyman Fisher Scholarship. Also thank you to VHF for their support and education to reduce the impact of hemophilia in my life. - Jackson White | VHF Member
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Your input is needed! Hemophilia Federation of America (HFA) has a survey out to gather community input about a memorial for those community members we've lost. Survey input will be presented to HFA's board to guide decision making.
The goal is to hear from at least 500 community members and they're almost there but need to hear from about 90 more people. Please help HFA reach that goal and hear from as many in our community as possible. Your input truly matters!
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Upcoming Events Fall 2016
November 3 - Women's Night Out (Richmond)
November 10 - Educational Dinner (Harrisonburg)
November 12 - Educational Lunch and Community Event (Williamsburg)
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