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Danielle "Dani" Liptak started the topic Rare Disease Day 2023 in the forum Advocacy Work 6 months, 4 weeks 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]
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Danielle "Dani" Liptak started the topic Disability/ADA Lawyers in the forum Mobility Aids and Medical Equipment 7 months, 2 weeks 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]
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Danielle "Dani" Liptak replied to the topic Traditional Family Values and Disability in the forum Adults With Muscular Dystrophy 7 months, 3 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]
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Danielle "Dani" Liptak replied to the topic Caregiver Appreciation in the forum Member Spotlight 7 months, 3 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!
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Danielle "Dani" Liptak posted a new activity comment 7 months, 3 weeks ago
have you had any luck?
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Danielle "Dani" Liptak started the topic National Registry for Your Type of MD? in the forum Science, Research, Clinical Trials 7 months, 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]
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Danielle "Dani" Liptak replied to the topic Self Defense for People with Disabilities in the forum Adults With Muscular Dystrophy 7 months, 4 weeks ago
Yes, I haven’t been able to find an adapted self defense class, but there are some Youtube videos for disabled people!
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Danielle "Dani" Liptak posted a new activity comment 7 months, 4 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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Danielle "Dani" Liptak posted a new activity comment 7 months, 4 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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Danielle "Dani" Liptak posted a new activity comment 7 months, 4 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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Danielle "Dani" Liptak posted a new activity comment 7 months, 4 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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Danielle "Dani" Liptak posted a new activity comment 7 months, 4 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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Danielle "Dani" Liptak posted a new activity comment 7 months, 4 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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Danielle "Dani" Liptak posted a new activity comment 7 months, 4 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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Danielle "Dani" Liptak posted a new activity comment 7 months, 4 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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Danielle "Dani" Liptak posted a new activity comment 7 months, 4 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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Danielle "Dani" Liptak posted a new activity comment 7 months, 4 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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Danielle "Dani" Liptak posted a new activity comment 7 months, 4 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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Danielle "Dani" Liptak posted a new activity comment 7 months, 4 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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Danielle "Dani" Liptak posted a new activity comment 7 months, 4 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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