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Danielle "Dani" Liptak

Home Members Danielle "Dani" Liptak
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@dani-liptak

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  • Profile picture of Danielle "Dani" Liptak

    Danielle "Dani" Liptak started the topic Rare Disease Day 2023 in the forum Muscular Dystrophy Awareness 3 weeks, 5 days ago

    Rare Disease Day is an observance held on the 28th of February to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families

    There are over 300 million people living with one or more of over 6,000 identified rare diseases around the world. The MDA classified…[Read more]

  • Profile picture of Danielle "Dani" Liptak

    Danielle "Dani" Liptak started the topic Disability/ADA Lawyers in the forum Mobility Aids and Medical Equipment 1 month, 1 week ago

    I had an accident last year due to a crack in the sidewalk. It damaged my wheelchair and I was injured. We asked the city of Wilmington to pay for the damages as they have downtown ambassadors that walk around and report things that need to be fixed. I was denied and the city of Wilmington was found to be NOT at fault but instead the construction…[Read more]

  • Profile picture of Danielle "Dani" Liptak

    Danielle "Dani" Liptak replied to the topic Traditional Family Values and Disability in the forum Adults​ ​With​ ​Muscular Dystrophy 1 month, 2 weeks ago

    It is hard for many to be seen as a caregiver because women mostly do it. I have seen this change with people becoming more accepting of the changing gender roles. Unfortunately, many in power and those getting older are not as keen on the changing roles of males, females, etc. I think most people have to look past the roles and ask if it is not…[Read more]

  • Profile picture of Danielle "Dani" Liptak

    Danielle "Dani" Liptak replied to the topic Caregiver Appreciation in the forum Member Spotlight 1 month, 2 weeks ago

    Oh, of course, I think I feel most like a burden when the argument is about caregiving! Especially if during or after the argument I am still in need of help from the person!

  • Profile picture of Danielle "Dani" Liptak

    Danielle "Dani" Liptak posted a new activity comment 1 month, 2 weeks ago

    have you had any luck?

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  • Profile picture of Danielle "Dani" Liptak

    Danielle "Dani" Liptak started the topic National Registry for Your Type of MD? in the forum Clinical Trials 1 month, 3 weeks ago

    Every year I get a letter from the National Registry of Myotonic Dystrophy and FSHD Muscular Dystrophy Patients and Family Members. I have participated in this registry since I was diagnosed at 12. I am now 34 and hope after years of participating it will help advance research.

    Do you receive or are part of an ongoing registry having to do with…[Read more]

  • Profile picture of Danielle "Dani" Liptak

    Danielle "Dani" Liptak replied to the topic Self Defense for People with Disabilities in the forum Adults​ ​With​ ​Muscular Dystrophy 1 month, 3 weeks ago

    Yes, I haven’t been able to find an adapted self defense class, but there are some Youtube videos for disabled people!

  • Profile picture of Danielle "Dani" Liptak

    Danielle "Dani" Liptak posted a new activity comment 1 month, 3 weeks ago

    Welcome, Shannon! My name is Dani Liptak. I am a moderator on the forums, along with Leah! I was diagnosed with a type of MD called facioscapulohumeral dystrophy at 12. Please feel free to respond to any open discussions we currently have! Also, let me know if there is a topic that you would like to discuss or any general questions about the…[Read more]

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  • Profile picture of Danielle "Dani" Liptak

    Danielle "Dani" Liptak posted a new activity comment 1 month, 3 weeks ago

    Welcome, Warren! My name is Dani Liptak. I am a moderator on the forums, along with Leah! I was diagnosed with a type of MD called facioscapulohumeral dystrophy at 12. Please feel free to respond to any open discussions we currently have! Also, let me know if there is a topic that you would like to discuss or any general questions about the…[Read more]

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  • Profile picture of Danielle "Dani" Liptak

    Danielle "Dani" Liptak posted a new activity comment 1 month, 3 weeks ago

    Welcome, Ann Marie! My name is Dani Liptak. I am a moderator on the forums, along with Leah! I was diagnosed with a type of MD called facioscapulohumeral dystrophy at 12. Please feel free to respond to any open discussions we currently have! Also, let me know if there is a topic that you would like to discuss or any general questions about the…[Read more]

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  • Profile picture of Danielle "Dani" Liptak

    Danielle "Dani" Liptak posted a new activity comment 1 month, 3 weeks ago

    Welcome, Krista! My name is Dani Liptak. I am a moderator on the forums, along with Leah! I was diagnosed with a type of MD called facioscapulohumeral dystrophy at 12. Please feel free to respond to any open discussions we currently have! Also, let me know if there is a topic that you would like to discuss or any general questions about the…[Read more]

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  • Profile picture of Danielle "Dani" Liptak

    Danielle "Dani" Liptak posted a new activity comment 1 month, 3 weeks ago

    Welcome, Amit! My name is Dani Liptak. I am a moderator on the forums, along with Leah! I was diagnosed with a type of MD called facioscapulohumeral dystrophy at 12. Please feel free to respond to any open discussions we currently have! Also, let me know if there is a topic that you would like to discuss or any general questions about the forums.…[Read more]

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  • Profile picture of Danielle "Dani" Liptak

    Danielle "Dani" Liptak posted a new activity comment 1 month, 3 weeks ago

    Welcome, Eduard! My name is Dani Liptak. I am a moderator on the forums, along with Leah! I was diagnosed with a type of MD called facioscapulohumeral dystrophy at 12. Please feel free to respond to any open discussions we currently have! Also, let me know if there is a topic that you would like to discuss or any general questions about the…[Read more]

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  • Profile picture of Danielle "Dani" Liptak

    Danielle "Dani" Liptak posted a new activity comment 1 month, 3 weeks ago

    Welcome, Manuela! My name is Dani Liptak. I am a moderator on the forums, along with Leah! I was diagnosed with a type of MD called facioscapulohumeral dystrophy at 12. Please feel free to respond to any open discussions we currently have! Also, let me know if there is a topic that you would like to discuss or any general questions about the…[Read more]

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  • Profile picture of Danielle "Dani" Liptak

    Danielle "Dani" Liptak posted a new activity comment 1 month, 3 weeks ago

    Welcome, Durgesh! My name is Dani Liptak. I am a moderator on the forums, along with Leah! I was diagnosed with a type of MD called facioscapulohumeral dystrophy at 12. Please feel free to respond to any open discussions we currently have! Also, let me know if there is a topic that you would like to discuss or any general questions about the…[Read more]

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  • Profile picture of Danielle "Dani" Liptak

    Danielle "Dani" Liptak posted a new activity comment 1 month, 3 weeks ago

    Welcome, Kiara! My name is Dani Liptak. I am a moderator on the forums, along with Leah! I was diagnosed with a type of MD called facioscapulohumeral dystrophy at 12. Please feel free to respond to any open discussions we currently have! Also, let me know if there is a topic that you would like to discuss or any general questions about the forums.…[Read more]

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  • Profile picture of Danielle "Dani" Liptak

    Danielle "Dani" Liptak posted a new activity comment 1 month, 3 weeks ago

    Welcome, Michael! My name is Dani Liptak. I am a moderator on the forums, along with Leah! I was diagnosed with a type of MD called facioscapulohumeral dystrophy at 12. Please feel free to respond to any open discussions we currently have! Also, let me know if there is a topic that you would like to discuss or any general questions about the…[Read more]

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  • Profile picture of Danielle "Dani" Liptak

    Danielle "Dani" Liptak posted a new activity comment 1 month, 3 weeks ago

    Welcome, Gabriel! My name is Dani Liptak. I am a moderator on the forums, along with Leah! I was diagnosed with a type of MD called facioscapulohumeral dystrophy at 12. Please feel free to respond to any open discussions we currently have! Also, let me know if there is a topic that you would like to discuss or any general questions about the…[Read more]

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  • Profile picture of Danielle "Dani" Liptak

    Danielle "Dani" Liptak posted a new activity comment 1 month, 3 weeks ago

    Welcome, Mark! My name is Dani Liptak. I am a moderator on the forums, along with Leah! I was diagnosed with a type of MD called facioscapulohumeral dystrophy at 12. Please feel free to respond to any open discussions we currently have! Also, let me know if there is a topic that you would like to discuss or any general questions about the forums.…[Read more]

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  • Profile picture of Danielle "Dani" Liptak

    Danielle "Dani" Liptak posted a new activity comment 1 month, 3 weeks ago

    Welcome, Paula! My name is Dani Liptak. I am a moderator on the forums, along with Leah! I was diagnosed with a type of MD called facioscapulohumeral dystrophy at 12. Please feel free to respond to any open discussions we currently have! Also, let me know if there is a topic that you would like to discuss or any general questions about the forums.…[Read more]

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  • Saying Farewell to the Forum by Leah Leilani
  • Rare Disease Day 2023 by Danielle “Dani” Liptak
  • Why Does Rare Disease Awareness Matter to You by Leah Leilani
  • Disability/ADA Lawyers by Danielle “Dani” Liptak
  • Creating a Culture of Broader Inclusion in Fashion and Beauty by Leah Leilani

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Disclaimer

This site is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

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