Providing information and inspiration to the hemophilia community.
TOUGH LOVE. PAVING THE WAY
TO A BRIGHT FUTURE

Megan takes many steps to help her sons increase their responsibility in managing their condition.
Liam is 14 years old and his brother Finnian is 11 years old; both have hemophilia B. What these brothers have in common goes far beyond their hemophilia. Their mother and caregiver, Megan, has empowered them to become masters of their universe through education, sports activities, and increase their responsibility in managing their condition.
Making the Grade Today for Tomorrow

Staying on Track Through Prevention
Megan knows the importance of excelling academically in order to position her sons for a good education, good career, and the health benefits that can come with it. "They have to think further ahead than other kids their age. School and the academics are what matters…it's what can support them and carry them in the future."
Megan is strong and determined to make it happen for her sons. In her own words, "I take no prisoners."
Staying on Track Through Prevention
Liam and Finnian participated in a number of sports like running cross-country before finding other, safe sports they could excel in.
"Liam loves track," says Megan, "and it suits him physically because it's more about running in short bursts than constant long-term running."
Megan knows that in order to participate in all of the things that keep them happy, both Liam and Finnian have to infuse preventively before that activity.
With their experience behind them, the boys have learned the role that skipping an infusion can play in the rest of their week's sports schedule. "It's become a part of their life to be able to keep up with the sports that they want to play."
As Megan puts it, "My sons' knowledge and experience has to go beyond academics and staying active. It's about knowing first hand what they need to do in every situation they may encounter."
From the classroom to the sports field to their future careers, Liam and Finnian have been given all the tools they need to help keep them on task and on track.
To learn more about preventive infusions, visit BeneFIX.com.
What Is XYNTHA?
Xyntha® Antihemophilic Factor (Recombinant), Plasma/Albumin-Free is indicated for the control and prevention of bleeding episodes in patients with hemophilia A (congenital factor VIII deficiency or classic hemophilia) and for surgical prophylaxis in patients with hemophilia A.
XYNTHA does not contain von Willebrand factor and, therefore, is not indicated in von Willebrand's disease.
Important Safety Information for XYNTHA
- Allergic reactions are possible with XYNTHA. Signs of an allergic reaction may include hives, rash with itching, chest tightness, difficulty breathing, faintness, or fast heartbeat. XYNTHA contains trace amounts of hamster protein. You may develop an allergic reaction to these proteins. Tell your doctor if you have had an allergic reaction to hamster protein.
- Call your doctor right away if bleeding is not controlled after using your factor VIII replacement therapy; this may be a sign of an inhibitor. Inhibitors have been observed in patients receiving factor VIII products, including XYNTHA.
- The most common adverse reaction in study 1 (safety and efficacy study) is headache (24% of subjects) and in study 2 (surgery study) is fever (41% of subjects). Other common side effects of XYNTHA include nausea, vomiting, diarrhea, or weakness.
- XYNTHA is an injectable medicine administered by intravenous (IV) infusion. Local irritation may occur when infusing XYNTHA after reconstitution in XYNTHA Solofuse.
Please see full Prescribing Information for XYNTHA.
What Is BeneFIX?
BeneFIX® Coagulation Factor IX (Recombinant) is an injectable medicine that is used to help control and prevent bleeding in people with hemophilia B. Hemophilia B is also called congenital factor IX deficiency or Christmas disease.
BeneFIX is NOT used to treat hemophilia A.
Important Safety Information for BeneFIX
- BeneFIX is contraindicated in patients who have manifested life-threatening, immediate hypersensitivity reactions, including anaphylaxis, to the product or its components, including hamster protein.
- Call your health care provider right away if your bleeding is not controlled after using BeneFIX.
- Allergic reactions may occur with BeneFIX. Call your health care provider or get emergency treatment right away if you have any of the following symptoms: wheezing, difficulty breathing, chest tightness, your lips and gums turning blue, fast heartbeat, facial swelling, faintness, rash or hives.
- Your body can make antibodies, called “inhibitors,” which may interfere with the effectiveness of BeneFIX.
- If you have risk factors for developing blood clots, such as a venous catheter through which BeneFIX is given by continuous infusion, BeneFIX may increase the risk of abnormal blood clots. The safety and efficacy of BeneFIX administration by continuous infusion have not been established.
- Some common side effects of BeneFIX are nausea, injection site reaction, injection site pain, headache, dizziness and rash.
Please see full Prescribing Information for BeneFIX.
CURRENT STORIES
creating happy campers
in the camp of success
camps out
from Pfizer
BIG DOG DELIVERS
Going back to school means packing backpacks with notebooks, pens, and other scholastic essentials. However, preparing your kids to make healthy decisions will outlive all those school supplies and ultimately help set them up for success. As you help them fill their school bag, here are some important factors and resources to fill and instill in their life's toolbox.
1. Confidence: learning to communicate their hemophilia to new friends can develop new approaches to healthy decision-making.
2. Community: building relationships between family, treatment teams, teachers, and coaches can support consistent treatment.
3. Information: as they grow, so will their curiosity about their disorder and their need to have more developmentally appropriate facts and knowledge.
4. Preparedness: even if treatment is going well, they still have hemophilia and need to be prepared to easily identify and treat a bleed if one occurs.
5. Independence: encouraging your kids to take a bigger role in their own treatment and health care builds young adults who take care of themselves.
Product Information Center
BeneFIX is now available with room temperature storage
BeneFIX enhanced its previous 6-month room temperature (2˚C to 30˚C/36˚F to 86˚F) storage to room temperature storage for up to 2 years. It's the same BeneFIX with more storage convenience.
Visit: BeneFIX.com to learn more.
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