LEMS PATIENT AMBASSADORS

Live access to experienced LEMS patients

This program enables patients with LEMS to participate in live local events and webcasts with Patient Ambassadors who understand the challenges of living with LEMS because they’re doing it every day. Attend a live event to hear their stories. You’ll gain valuable insights and life lessons. In addition, you can interact with other members of the LEMS patient community, hear their thoughts—and share yours!

Meet our LEMS Patient Ambassadors

“Follow your instincts. Only you know you. Although we are all different, we have one thing that binds us together and it’s this rare disease, Lambert-Eaton myasthenic syndrome. But we also have something that keeps us going: hope.”

  • Three-year journey to diagnosis
  • She struggled to find answers and received multiple misdiagnoses, including Sjogren’s syndrome and myasthenia gravis, until eventually she was diagnosed with LEMS
  • Mary Ann immediately researched the condition, and found information on a potential treatment. She brought it up to her doctor and he agreed that it sounded like a good treatment option for her
  • Enjoys crocheting, gardening, and doing puzzles and word searches
  • Mary Ann had back pain as a nurse, but treatment provided relief for years—until the back pain returned in 2014, soon accompanied by trouble with walking, fatigue, and double vision

“LEMS is a life-changing diagnosis, and in a way, we journey through the five stages of grief. It’s a loss of normalcy but we can adapt to our new normal. Be your own advocate Do your research. Be nosy, ask questions, and educate yourself. Hope is the greatest gift of all—from hope grows love, peace, and faith, so don’t lose it.”

  • Eight-month journey to diagnosis
  • Barbara’s initial symptoms came on fast—her body seemingly weakening in a 20-hour span
  • She struggled with feelings of depression and her faith after her LEMS diagnosis, until family and friends persuaded her to get help and keep fighting
  • Barbara researched LEMS and worked with her doctor to the find the right holistic treatment plan for her
  • Enjoys sewing and crafting

“The outcome of my story is that you must continue to advocate for yourself. You might not get the answer right away, but don’t give up. We can’t take our health for granted. LEMS is on my mind every day, but I don’t let it consume me. Fight for what you need, and know that you are more than this condition.”

  • Two-and-a-half year journey to diagnosis
  • Chip’s symptoms came on suddenly in the spring of 2012 during a family vacation
  • He saw multiple doctors and got several misdiagnoses, including myasthenia gravis and mixed connective tissue disease, until Chip’s wife finally learned about a clinic that was able to diagnose him with LEMS
  • Chip worked with his neurologist to find the right treatment plan for him, and learned how to live a life he enjoys, even with LEMS
  • Enjoys golfing and watching baseball

“LEMS may affect how physically active I can be, but it also offers me the opportunity to actively increase awareness about the disease—and to remind people that ‘staying in the game,’ can refer to attitude, not just physical ability.”

  • Four-year journey to diagnosis
  • In 2014, Ken noticed episodes of cramping and issue with his balance—affecting his work as a sales rep in the construction industry
  • His symptoms worsened; he and his wife struggled to find answers, until he was referred to a new doctor who diagnosed him with LEMS
  • Ken worked with his doctor to find the right treatment plan for him, and a way to keep doing what he enjoys while pacing himself
  • Enjoys hiking, camping, carpentry, and playing cards

“There is a very fine line between accepting your limitations with a chronic disease and becoming complacent, but at the same time, you can’t give up hope. I still have bad days but recognizing that I can still contribute by sharing my story to encourage others on a similar journey makes it all worth it.”

  • Ten-year journey to diagnosis
  • Joyce had always been very busy with her family and her career as a nurse—so she knew something was wrong when she started to feel fatigued
  • Joyce searched for answers for years until she found a doctor who listened to her and who properly diagnosed her with LEMS
  • She then worked with her doctor to find the right treatment plan for her and learn what activities should could do with LEMS
  • Enjoys gardening and boating

“I try to always keep focused on the good and how far I’ve come. I am truly blessed and happy I never gave up the fight. So stay positive, only keep positive people in your circle, and never be too proud to ask for help. Be your own advocate and keep pushing to find what works for you.”

  • Six-month journey to diagnosis
  • Kristina was always a "go-getter,” until she developed symptoms like dry mouth, blurred vision, and increasing fatigue
  • Her symptoms kept progressing, even resulting in Kristina leaving her job, until a neurologist eventually diagnosed her with LEMS
  • Kristina worked with her doctor to find the right treatment for her, and to maintain a healthy lifestyle, which helped her adapt to life without LEMS
  • Enjoys walking on the beach, bike riding, buying gifts for others, and baking

“It doesn’t matter what you have or don’t have; listen to your body. You are the only one who knows how you feel, and you have to express that. I’ve been listening to my body for several years now and I know to fight for what I need. My hope is that if we all advocated for our health, and get the word out about LEMS, more people can be helped like I have been.”

  • One-year and five months’ journey to diagnosis
  • Pat’s symptoms began as a bad tase in her mouth that eventually progressed to fatigue and difficulty walking
  • She and her doctor searched for answers to all her symptoms until Pat was referred to a neurologist who diagnosed her with LEMS
  • Pat found tools to help her keep moving and a treatment plan that improved her symptoms
  • Enjoys gardening, reading, decorating, and shopping

CONTACT A LEMS PATIENT AMBASSADOR

Call 1-855-697-3961 to find out about live programs in your area or view a schedule of upcoming webcasts.

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What is FIRDAPSE®?

FIRDAPSE is a prescription medicine used to treat adults 17 years of age or older with Lambert-Eaton myasthenic syndrome (LEMS). The safety and efficacy of FIRDAPSE in patients under the age of 17 has not been established.

IMPORTANT SAFETY INFORMATION

What is the most important information I should know about FIRDAPSE?

  • FIRDAPSE can cause seizures.
    • You could have a seizure even if you never had a seizure before.
    • Do not take FIRDAPSE if you have ever had a seizure.

Stop taking FIRDAPSE and call your doctor right away if you have a seizure while taking FIRDAPSE.

Do not take FIRDAPSE if you:

  • have ever had a seizure.
  • are allergic to amifampridine phosphate, or another aminopyridine.

Before you take FIRDAPSE, tell your doctor about all of your medical conditions, including if you:

  • are taking another aminopyridine, such as compounded 3,4-diaminopyridine (3,4-DAP)
  • have had a seizure
  • have kidney problems
  • have liver problems
  • are pregnant or plan to become pregnant. It is not known if FIRDAPSE will harm your unborn baby. You and your doctor will decide if you should take FIRDAPSE while you are pregnant.
  • There is a registry for women who become pregnant during treatment with FIRDAPSE. The purpose of this registry is to collect information about your health and your baby’s health. Contact the registry as soon as you learn that you are pregnant, or ask your healthcare provider to contact for you by calling 855-212-5856 (toll free), contacting the Fax number 877-867-1874 (toll free), emailing the Pregnancy Coordinating Center at firdapsepregnancyregistry@ubc.com, or visiting the study website www.firdapsepregnancystudy.com.
  • are breastfeeding or plan to breastfeed. It is not known if FIRDAPSE passes into your breast milk. Talk to your doctor about the best way to feed your baby while taking FIRDAPSE.

Tell your doctor about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements.

How should I take FIRDAPSE?

  • Take FIRDAPSE exactly as your doctor tells you to take it. Do not change your dose of FIRDAPSE.
  • Do not take more than 2 tablets of FIRDAPSE at one time or more than 8 tablets of FIRDAPSE in a 24-hour period.
  • FIRDAPSE can be taken with or without food.
  • If you miss a dose of FIRDAPSE, skip that dose and take your next dose at your next scheduled dose time. Do not double your dose to make up the missed dose.
  • Do not take FIRDAPSE together with other medicines known to increase the risk of seizures.
  • If you take too much FIRDAPSE, call your doctor or go to the nearest hospital emergency room right away.

What are the possible side effects of FIRDAPSE?

FIRDAPSE may cause serious side effects, including:

  • Seizures. See "What is the most important information I should know about FIRDAPSE?"
  • Serious allergic reactions, such as anaphylaxis. FIRDAPSE can cause serious allergic reactions. Stop taking FIRDAPSE and call your doctor right away or get emergency medical help if you have:
    • shortness of breath or trouble breathing
    • swelling of your throat or tongue
    • ­hives
  • The most common side effects of FIRDAPSE include:
    • tingling around the mouth, tongue, face, fingers, toes, and other body parts
    • upper respiratory infection
    • stomach pain
    • nausea
    • diarrhea
    • headache
    • increased liver enzymes
    • back pain
    • high blood pressure
    • muscle spasms

Tell your doctor if you have any side effect that bothers you or that does not go away.

These are not all the possible side effects of FIRDAPSE.

Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

How should I store FIRDAPSE?

  • Store FIRDAPSE at 68ºF to 77ºF (20ºC to 25ºC).
  • Safely throw away FIRDAPSE that is out of date or no longer needed.

Keep FIRDAPSE and all medicines out of the reach of children.

If you would like more information, ask your doctor or pharmacist for additional information about FIRDAPSE.

The active ingredient in FIRDAPSE is amifampridine phosphate. Inactive ingredients are calcium stearate, colloidal silicon dioxide, and microcrystalline cellulose.

Please see full Prescribing Information for additional Important Safety Information.

What is FIRDAPSE®?

FIRDAPSE is a prescription medicine used to treat adults 17 years of age or older with Lambert-Eaton myasthenic syndrome (LEMS). The safety and efficacy of FIRDAPSE in patients under the age of 17 has not been established.

IMPORTANT SAFETY INFORMATION

What is the most important information I should know about FIRDAPSE?

  • FIRDAPSE can cause seizures.
    • You could have a seizure even if you never had a seizure before.
    • Do not take FIRDAPSE if you have ever had a seizure.

Stop taking FIRDAPSE and call your doctor right away if you have a seizure while taking FIRDAPSE.

Do not take FIRDAPSE if you:

  • have ever had a seizure.
  • are allergic to amifampridine phosphate, or another aminopyridine.

Before you take FIRDAPSE, tell your doctor about all of your medical conditions, including if you:

  • are taking another aminopyridine, such as compounded 3,4-diaminopyridine (3,4-DAP)
  • have had a seizure
  • have kidney problems
  • have liver problems
  • are pregnant or plan to become pregnant. It is not known if FIRDAPSE will harm your unborn baby. You and your doctor will decide if you should take FIRDAPSE while you are pregnant.
  • There is a registry for women who become pregnant during treatment with FIRDAPSE. The purpose of this registry is to collect information about your health and your baby’s health. Contact the registry as soon as you learn that you are pregnant, or ask your healthcare provider to contact for you by calling 855-212-5856 (toll free), contacting the Fax number 877-867-1874 (toll free), emailing the Pregnancy Coordinating Center at firdapsepregnancyregistry@ubc.com, or visiting the study website www.firdapsepregnancystudy.com.
  • are breastfeeding or plan to breastfeed. It is not known if FIRDAPSE passes into your breast milk. Talk to your doctor about the best way to feed your baby while taking FIRDAPSE.

Tell your doctor about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements.

How should I take FIRDAPSE?

  • Take FIRDAPSE exactly as your doctor tells you to take it. Do not change your dose of FIRDAPSE.
  • Do not take more than 2 tablets of FIRDAPSE at one time or more than 8 tablets of FIRDAPSE in a 24-hour period.
  • FIRDAPSE can be taken with or without food.
  • If you miss a dose of FIRDAPSE, skip that dose and take your next dose at your next scheduled dose time. Do not double your dose to make up the missed dose.
  • Do not take FIRDAPSE together with other medicines known to increase the risk of seizures.
  • If you take too much FIRDAPSE, call your doctor or go to the nearest hospital emergency room right away.

What are the possible side effects of FIRDAPSE?

FIRDAPSE may cause serious side effects, including:

  • Seizures. See "What is the most important information I should know about FIRDAPSE?"
  • Serious allergic reactions, such as anaphylaxis. FIRDAPSE can cause serious allergic reactions. Stop taking FIRDAPSE and call your doctor right away or get emergency medical help if you have:
    • shortness of breath or trouble breathing
    • swelling of your throat or tongue
    • ­hives
  • The most common side effects of FIRDAPSE include:
    • tingling around the mouth, tongue, face, fingers, toes, and other body parts
    • upper respiratory infection
    • stomach pain
    • nausea
    • diarrhea
    • headache
    • increased liver enzymes
    • back pain
    • high blood pressure
    • muscle spasms

Tell your doctor if you have any side effect that bothers you or that does not go away.

These are not all the possible side effects of FIRDAPSE.

Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

How should I store FIRDAPSE?

  • Store FIRDAPSE at 68ºF to 77ºF (20ºC to 25ºC).
  • Safely throw away FIRDAPSE that is out of date or no longer needed.

Keep FIRDAPSE and all medicines out of the reach of children.

If you would like more information, ask your doctor or pharmacist for additional information about FIRDAPSE.

The active ingredient in FIRDAPSE is amifampridine phosphate. Inactive ingredients are calcium stearate, colloidal silicon dioxide, and microcrystalline cellulose.

Please see full Prescribing Information for additional Important Safety Information.