About us

This is who we are and what we do

At Spark® Therapeutics, we challenge the inevitability of genetic disease. We are committed to delivering patient services that are as innovative and insightful as our cutting-edge gene therapy. Spark Therapeutics Generation Patient ServicesSM partners with patients, responding to their specific needs, to instill confidence that the support provided is as novel as the treatment received.

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A dedicated team working with you

Every patient who enrolls in the program will have the support of a dedicated Patient Access Specialist (PAS) and Patient Access Liaison (PAL).

Your PAS is always your first point of contact and can help with navigating insurance coverage and coordinating your ocular gene therapy treatment center visits. Meanwhile, your PAL works outside the Spark Therapeutics office and is a good source of in-person support when you need it. Your PAL can help you understand your insurance coverage throughout your treatment journey.

Meet our Patient Access Specialists and Patient Access Liaisons

Meet PAS,Susan Hafner
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Susan Hafner

During my career in sales and professional education and research at a pharma company, my favorite aspects were the cutting-edge research, the relationships I developed, and seeing the positive impacts made on patients’ lives.

My role at Spark Therapeutics offers me those same opportunities, surrounded by people who truly “champion the patient,” at a company whose vision and mission I can believe in. More important, after raising my own family, I know how hard it is to be a parent/caregiver and have seen family and friends deal with rare genetic diseases. I now want to utilize my skills and life experiences to help others as they navigate challenges in their lives.

When I am not working or spending time with my family, I love to read, play games, and spend time outdoors in my garden. I also love to cook, entertain friends and family, and travel to try new foods.

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Meet PAS,Manuel A. Lopez Serrano
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Manuel A. Lopez Serrano

I am native to Utuado, a beautiful small town in the central mountains of Puerto Rico. At nine months of age, I was diagnosed with hemophilia B, a rare genetic bleeding disorder, but I have never let that define who I am. With the support of my friends, family, and healthcare professionals, I have been able to manage my bleeding disorder and live my life to the fullest. Fueled by my experience and inspired by the diverse rare disease communities, I decided to seek a profession that would allow me to help people access novel and life-changing therapies.

I graduated from Universidad del Este, Puerto Rico, where I obtained a bachelor’s degree in Business Administration. I am currently attending Southern New Hampshire University to obtain a master’s degree in Healthcare Administration. I have spent most of my career working as a volunteer, contracted patient advocate, specialty pharmacy sales representative, patient care coordinator, educator, and keynote speaker for the bleeding disorders rare disease community. I have dedicated my life to empowering, motivating, and educating rare disease communities to understand that their diagnosis is not a reason to give up, but a reason to keep on living!

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Meet PAL,Jodie Danko
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Jodie Danko

I am proud to have accumulated a great deal of experience in rare genetic diseases. My passion is to utilize my knowledge and the resources available to me to help patients receive the best possible care. It is particularly rewarding to know that patients have received the correct diagnosis and treatment because of the work I have done to help them along the way.

I joined Spark Therapeutics to be a part of bringing potentially groundbreaking, one-time gene therapies to patients. The company is built on innovative science, and all of our teams are deeply committed to putting patients first and foremost at all times. It is both humbling and inspiring to leverage decades of research and development for the patients who could most benefit from it.

Outside of my professional pursuits, I have two daughters who are active in swimming and soccer. I enjoy watching them in the pool and on the field, excelling in the sports they love. I also relish family vacations and traveling. We are an active outdoors family and love to paddleboard, ski, and boat on the Michigan Great Lakes.

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Meet PAL,Kathryn Lisowski (Kate)
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Kathryn Lisowski (Kate)

Having worked in healthcare for much of my career, I can honestly say that every day has been a rewarding experience. As a passionate advocate for patients, I greatly enjoy the opportunity to connect with them and their families, even if in the smallest of ways. The potential to positively impact their lives is both powerful and extremely humbling.

Once I learned about Spark Therapeutics, I knew this is where I wanted to be. The driving force behind the company is the unified energy shared with the patients. The collaborative mission of innovation, improvement, and strength aligns with the standards and values I hold true for myself.

Outside of work, I enjoy spending time with my family and friends. I love living in Philadelphia with my husband and taking advantage of city events, visiting museums, and going to concerts. I also appreciate the outdoors and spending time at our family lake house in the Poconos to hike, fish, and relax.

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Meet PAL,Lauren McLaughlin
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Lauren McLaughlin

Since childhood, I have dealt with chronic ear infections and partial hearing loss. I always thought that it set me apart, and felt embarrassed about not being able to hear well. The people around me were always supportive and positive, which made overcoming hurdles a little easier. Having people in my corner, whether they were the staff at my doctor’s office or my family and friends, made me realize just how lucky I was. I wanted to be able to do the same for others.

Working at Spark Therapeutics allows me to be part of something new, with the potential to create profound changes in patients’ lives. It’s simply incredible. I want to make the patients I work with feel at ease and to understand what they are going through. Whether I’m working with patients or their families, it’s important to me that they receive the best possible care at every point in their treatment journey.

Fall is my favorite season. It’s the perfect time of year for watching football (E-A-G-L-E-S EAGLES) with my partner, Shane, and our golden retriever, Linc. I love to travel and explore new restaurants, and cannot wait to plan my next adventure.

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Meet PAL,Megan Loftis
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Megan Loftis

Having spent the majority of my career in the healthcare industry, I was fortunate to be able to join this incredible organization at Spark. Spark’s values are truly lived in the daily responsibilities of each of my colleagues’ roles—championing the patient, breaking barriers, operating with excellence, respecting others, and collaboration. My decision to join Spark was in seeing these values lived daily and the dedication to patients in everything they do.

Serving as a Patient Access Liaison is an incredibly rewarding role because of the partnership with patients, helping them obtain access to life-changing therapies. There has been no greater gift than ending the day knowing our work makes a difference in the lives of patients and caregivers.

Outside of work, I enjoy time with my family—my husband and two young boys. We live on a lake in Texas and spend most of the year fishing or on the water! Being a mom to young boys requires me to stay active and I enjoy running and yoga. When I am not trying to keep up with my boys, my husband and I love to cook and we enjoy entertaining close friends.

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IMPORTANT SAFETY INFORMATION FOR LUXTURNA (voretigene neparvovec-rzyl)

The following serious side effects may occur during or after the administration of LUXTURNA:

  • Eye infections, including a serious infection inside of the eye called endophthalmitis, that may lead to blindness.
  • Permanent decline in visual acuity, or the sharpness of central vision.
  • Changes in the retina (the thin layer of tissue in the back of the eye) that can lead to vision loss including:
    • development of a hole, thinning, or loss of function of the retina, separation of the layers in the center of the retina, loss of retinal cells and the choroid (the layer of blood vessels that lines the back of the eye), or bleeding in the retina.
    • breaks in or wrinkling on the surface of the retina or detachment of the retina.
  • Increased pressure inside of the eye. You should follow-up with your healthcare professional as instructed to detect and treat any increased pressure in the eye as this may cause blindness.
  • Expansion of the air bubble formed in the eye after administration of LUXTURNA. You should avoid air travel, travel to high elevations, or scuba diving until your healthcare professional has told you that the air bubble formed in the eye following administration of LUXTURNA has disappeared. Engaging in these activities while the air bubble is present can cause permanent vision loss.
  • Formation or worsening of cataract (clouding of the lens inside of the eye).

Tell your healthcare professional right away if you have any of the following symptoms of these serious side effects:

  • Seeing floaters (specks that float about in your field of vision)
  • Pain in the eye
  • Any change in vision including decreased vision or blurred vision
  • Seeing flashes of light

The following are the most common side effects that may occur with LUXTURNA:

  • Redness of the eye
  • Cataract (clouding of the lens inside of the eye)
  • Increased pressure inside of the eye
  • Breaks in the retina
  • Dellen (thinning of the clear layer in the front of the eye)
  • Development of a hole in the center of the retina
  • Subretinal deposits (deposits under the retina)
  • Eye swelling, irritation or pain
  • Wrinkling on the surface of the center of the retina

Treatment with LUXTURNA is not recommended for patients younger than 12 months of age because the retina is still growing, which may affect how LUXTURNA works.

Because small quantities of LUXTURNA may be in your tears for a short period of time, for the first 7 days after administration of LUXTURNA, place any waste material from dressings, tears and nasal secretions in sealed bags prior to disposal.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088. You may also report side effects to Spark® Therapeutics at 1-855-SPARKTX (1-855-772-7589).

This information does not take the place of talking to your healthcare professional about your medical condition or treatment. If you have questions about LUXTURNA after reading this information, ask your healthcare professional.

Please see the US Full Prescribing Information for LUXTURNA.

INDICATION

LUXTURNA (voretigene neparvovec-rzyl) is a prescription gene therapy product used for the treatment of patients with inherited retinal disease due to mutations in both copies of the RPE65 gene, which can only be confirmed through genetic testing.

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