Delhi Association of Muscular Dystrophy ,DAMD

26/11/2024

10/12/2023

https://surveyheart.com/form/657067d25cb33709aefda7cf

10/10/2023

02/10/2023

"Your unwavering dedication to our NGO's mission is truly remarkable. You are the heart and soul of our team, and your selfless commitment to making the world a better place is an inspiration to us all. Thank you for your tireless efforts and for being the driving force behind the positive change we're creating together. Your passion and hard work are making a real difference in the lives of those we serve. Keep up the incredible work!" 🌟🙏

29/08/2023

We are excited to announce a special event organized by DAMD, aimed at raising awareness and providing support for individuals living with Muscular Dystrophy and Cerebral Palsy. This event is scheduled to take place on September 17, 2023, and we invite everyone in the community to join us in this endeavour.
Event Details:
Date: September 17, 2023
Time: 9:00 A.M. to 4:00 P.M.
Venue: Karawal Nagar Near Jeewan Jyoti School, Delhi 110094
Event Highlights:
1.Educational Workshops: Gain insights into Muscular Dystrophy and Cerebral Palsy through informative sessions conducted by healthcare professionals and experts in the field.
2.Interactive Activities: Engage in hands-on activities designed to promote understanding and empathy towards individuals living with these conditions.
3.Support Networks: Connect with individuals and families who are personally affected by Muscular Dystrophy and Cerebral Palsy, providing a platform to share experiences and create a sense of community.
4.Awareness Campaigns: Participate in awareness campaigns to spread knowledge about these conditions and contribute to reducing stigma.
5.Resource Sharing: Access valuable resources, information, and guidance about available treatments, therapies, and support systems.

24/08/2023

13/08/2023

Duchenne Drug Approval Breakthrough! Remember, MDFINDIA has been a part of the global DMD community that advocated with the FDA for this approval.
19.09.2016-Sarepta Therapeutics Announces FDA Accelerated Approval of EXONDYS 51™ (eteplirsen) injection, an Exon Skipping Therapy to Treat Duchenne Muscular Dystrophy (DMD) Patients Amenable to Skipping Exon 51.
Important
• The drug will be useful for DMD children with a confirmed deletion/mutation of Exon 51 only.
• Commercial sale of the drug will be launched soon in the U.S.

26/07/2023

Welcome to our NGO, a dedicated organization committed to making a positive impact in the lives of individuals living with Muscular Dystrophy and Cerebral Palsy. Our journey began with a simple yet powerful vision: to create a world where these individuals can lead fulfilling lives, free from the burdens of these debilitating conditions. Through unwavering dedication, passionate advocacy, and comprehensive support services, we aim to empower individuals affected by Muscular Dystrophy and Cerebral Palsy and foster an inclusive society where they can thrive.

1. Understanding Muscular Dystrophy:

Muscular Dystrophy is a group of genetic disorders characterized by progressive muscle weakness and degeneration. It affects individuals of all ages and races, making everyday tasks challenging and leading to a loss of mobility and independence. Depending on the specific type of Muscular Dystrophy, symptoms may vary in severity and onset, but they all share a common thread of diminishing muscle function over time.

The impact of Muscular Dystrophy extends beyond the affected individuals; it affects families, caregivers, and the community at large. Witnessing the struggles faced by those living with Muscular Dystrophy motivated us to establish this NGO, as we saw a pressing need to provide comprehensive support, research, and advocacy to improve the lives of those impacted by this condition.

2. Understanding Cerebral Palsy:

Cerebral Palsy is a group of permanent movement disorders that appear in early childhood and affect body movement, muscle coordination, and balance. It arises from abnormal brain development or damage to the developing brain, primarily during pregnancy, childbirth, or shortly after birth. Individuals with Cerebral Palsy may experience challenges with mobility, communication, and daily living activities, which can vary in severity.

Cerebral Palsy is a lifelong condition, and the needs of individuals with this condition evolve as they grow and develop. Our NGO recognizes the unique challenges faced by those with Cerebral Palsy and their families, and we are committed to providing comprehensive support and tailored programs to enhance their quality of life.

Our Mission
The core mission of our NGO is to empower individuals living with Muscular Dystrophy and Cerebral Palsy by offering holistic support, fostering inclusion, and promoting research for better understanding and treatment. We firmly believe that every individual, regardless of their physical abilities, deserves an opportunity to live a life of dignity and purpose.

Our Programs and Services

1. Support Services: We provide a range of support services, including counseling, therapy, and assistance with adaptive technologies and mobility aids. Our team of dedicated professionals works closely with individuals and their families to develop personalized care plans that address their unique needs.

2. Educational Initiatives: We actively engage in educational programs to raise awareness about Muscular Dystrophy and Cerebral Palsy, dispel myths, and promote inclusivity. We collaborate with schools and communities to create environments that foster understanding and acceptance.

3. Advocacy: We advocate for the rights and needs of individuals with Muscular Dystrophy and Cerebral Palsy at local, national, and international levels. We work with policymakers and stakeholders to ensure that disability rights are protected and that accessibility and inclusion are prioritized.

4. Research and Innovation: We support and fund research initiatives aimed at advancing the understanding and treatment of Muscular Dystrophy and Cerebral Palsy. Through partnerships with medical institutions and researchers, we strive to make significant strides in improving the lives of those affected by these conditions.

Join Us in Our Journey

As an NGO, we are fueled by the generosity and compassion of individuals, corporations, and volunteers who share our vision of a more inclusive and compassionate world. Whether you are directly impacted by Muscular Dystrophy or Cerebral Palsy, a caregiver, or simply someone who wants to make a difference, we invite you to join us in our mission. Together, we can create a society where individuals with Muscular Dystrophy and Cerebral Palsy are not defined by their conditions but by their strength, resilience, and boundless potential.

22/07/2023

Dear

I hope this letter finds you in good health and high spirits. My name is Dr.Naveen Bharti, and I am writing to you today with a deep sense of empathy and compassion for those who are battling the challenging conditions of Muscular Dystrophy and Cerebral Palsy.

As members of a community that values inclusivity and support, it is our duty to lend a helping hand to those who need it the most. Many individuals and families are facing immense hardships due to the financial burden brought on by medical expenses related to these debilitating conditions. The cost of treatment, specialized equipment, therapy, and essential care can often become overwhelming, hindering their ability to access the necessary support.

To address this pressing issue and make a positive impact on the lives of those suffering from Muscular Dystrophy and Cerebral Palsy, we have initiated a donation drive. Our goal is to raise funds that will directly contribute to easing the financial strain these families endure and providing them with the resources they need to improve their quality of life.

We firmly believe that with your esteemed organization's compassionate support, we can make a significant difference in the lives of these individuals. We kindly request your partnership in this endeavor by making a generous donation to our cause. Your contribution, no matter the amount, will go a long way in bringing relief and hope to these brave souls and their families.

Here are some ways you can donate:

Bank Transfer: You can directly transfer your donation to the following bank account:

Bank Name: Paytm bank

Account Name: Naveen Bharti

Account Number: 917701947216

IFSC CODE: PYTM0123456

Check Donation: Make checks payable to [Organization Name] and write "Muscular Dystrophy and Cerebral Palsy Relief Fund" on the memo line.

Your contribution will not only be a testament to your organization's commitment to social responsibility but also an investment in the well-being of these resilient individuals who face daily challenges with determination and courage.

In recognition of your generosity, we will acknowledge your support through various channels, including our website, social media, and newsletters. Additionally, we are open to discussing any other form of recognition you might prefer.

We look forward to your partnership in this noble cause and making a profound impact on the lives of those affected by Muscular Dystrophy and Cerebral Palsy. Should you have any questions or require further information, please feel free to contact us at 7701947216 or neurocare77@gmail.com

Thank you for taking the time to read this letter and considering our request for support. Together, we can create a world where everyone has the opportunity to lead a life of dignity and happiness, regardless of their medical conditions.
you can also visit our Instagram page to see our work
link : https://instagram.com/delhi_association_of_md?igshid=ZDc4ODBmNjlmNQ==

With heartfelt gratitude,

To donate - https://milaap.org/fundraisers/support-treatment-of-muscular-dystrophy?utm_medium=whatsapp_status_message&utm_source=app

Dear I hope this letter finds you in good health and high spirits. My name is Dr.Naveen Bharti, and I am writing to you today with a deep sense of empathy and compassion for those who are battling the challenging conditions of Muscular Dystrophy and Cerebral Palsy. As members of a community that