ADLD Center

Inderpal Singh
Troy, Michigan, US
$208,506pledged
81donors
$

  • Mission
  • Updates
  • Donor List
  • Photos

Donations will be matched DOLLAR FOR DOLLAR up to $250,000

Please donate by ACH (electronic bank) to save on processing fees.  ACH donations will appear here when they clear (usually 5-7 business days).

Autosomal Dominant Leukodystrophy (ADLD) is a rare, genetic disease that causes symptoms similar to multiple sclerosis (MS) e.g., paralysis, speech impairment, bowel dysfunction, etc. ADLD is a fatal disease that slowly progresses - patients often suffer from the disease for several decades after onset.

Each child from a parent with ADLD has a 50% chance of developing ADLD as well.

While ADLD is very rare, with only around 1000 known patients, it has been found around the world in countries within the Americas, Europe, and Asia.

The mission of the ADLD Center (www.adld.center) is to support research into various aspects of Autosomal Dominant Leukodystrophy. We aim to focus on facilitating research on how the disease works, as well as potential therapies, while helping create a support network to disseminate relevant and helpful information for patients and their families.

Our Work Includes:

- Raising awareness about ADLD among physicians, scientists, and the general public
- Supporting relevant research through a grant research program
- Providing a caring and educational community for patients and their families; and
- Serving as a unique information resource.

Details on our efforts can be found here: Fundraising Overview PDF

We are raising funds for the 2021 - 2023 time period. Please see additional details either in the PDF, looking at the "Photos" section, or by watching our Webinar from October 2021 above!

Donations will be matched DOLLAR FOR DOLLAR up to $250,000

  • 12/31/2022

    2022 Update and 2023 Plan

    Please take a quick look at our video update for 2022, which is now on our profile page at dvnetwork.org/adld and available here: https://youtu.be/OHOm93nSLqs

    We also lay out our funding needs and spending plan for 2023 and 2024.

    Thank you for your support.

  • 11/10/2022

    Donor Update - November 2022


    Thank you for generously supporting our efforts on behalf of the ADLD community!

    2022 has been a busy and productive year for the ADLD Center. We want to take this opportunity to share highlights of our recent activities and momentum to support the community. Our key work streams include: Scientific Research, Collaborative Clinical Network, Patient Engagement + Registry, Strategy & Operations, Communications, Fundraising, and Grants. 

    We hope you will take a moment to read through our recent accomplishments below – this work would not be possible without your investment. 

    • Funded key research initiative with a gift of $25,000 to support our partner Dr. Quasar Padiath’s crucial ADLD research in the Department of Human Genetics at the School of Public Health at the University of Pittsburgh.
    • Officially launched The ADLD Research Hub! We continue our efforts to build a comprehensive ADLD Patient Registry and engage with patients and caregivers to help us understand and serve the needs of the community, in addition to facilitating research.
    • Continued creating awareness by leading another well-attended webinar with a number of scientists and patients alike (watch here). There was a very extensive Q&A after the webinar that demonstrated the high level of patient engagement we are seeing.
    • Presented at the first ever ADLD scientific conference in the world. Met with leading researchers from various countries including Italy and the Netherlands, and learned about the latest ADLD research. We also informed them about our efforts in order to connect with their ADLD patients and convey our upcoming grant opportunity for ADLD research.
    • Attended key scientific meetings including the 2022 Global Leukodystrophy Initiative (GLIA) working meeting, held in Philadelphia, PA, which was designed to have patient advocacy groups collaborate directly with researchers and pharmaceutical industry stakeholders to determine readiness for a clinical trial and path to treatment. 
    • Investing in research through a partnership with a fellow non-profit org, the Orphan Disease Center at the University of Pennsylvania. We are developing a focused funding opportunity to help meet the needs of our research community. The Request for Applications will launch by the end of the year, and we will award two $50,000 grants to suitable research team(s). 

    A few more projects that are currently in progress where your funds will have continued impact:

    • Exploring a new therapeutic path with n-Lorem Foundation to discover potential treatments for patients with rare genetic diseases. New genetics-based approaches show promise for treating monogenic diseases like ADLD. 
    • Building out a Research Consortium to hold regularly scheduled meetings with our ADLD research collaborators to address challenges, track progress, and learn from one another on recent advancements. Funding research based on the budget we have available will directly impact the progress we collectively make towards finding a cure for the disease.
    • Creating an ADLD Center of Excellence at an academic medical center (AMC) to establish a protocol for tracking disease severity and progression from a clinical perspective. Once we have a proposed treatment intervention, this will enable us to reliably track its efficacy. While AMC’s (i.e physicians, scientists, nurses, care coordinators, etc.) are interested in finding cures for diseases, prioritizing ADLD (i.e. securing physician and team time) over any other rare disease will depend on successful fundraising for ADLD. This makes our fundraising critical to success in treating the disease.
    • Serving patients through community events and advancement of the ADLD Research Hub. We must both create a supportive community for patients and caregivers in addition to pushing towards a cure.

    We are grateful to have you by our side and look forward to keeping you updated on our progress.

  • 03/08/2022

    Donor Update - March 2022

    Thank you so much for your generous contribution to the ADLD Center!

    2022 has been an incredibly focused year for the Center as we work to make significant progress on our strategic priorities. We want to take a moment and share highlights of our recent momentum with you:

    • Creating Awareness through a highly attended webinar with a number of scientists and patients alike (watch here)
    • Forming strong clinical partnerships across the U.S. to build our clinical care network (e.g., Mayo Clinic, University of Pittsburgh, Harvard, Italian Centers)
      Selecting a patient registry platform to securely bring together patient data for research and treatment development
    • Establishing a committed and expert volunteer base of 8-10 individuals committed to driving our key workstreams (Strategy + Partnerships, Collaborative Research Network, Patient Engagement + Registry, Communications, Fundraising + Finance, and Grants)
    • Ensuring sustainability of efforts by applying for multiple research funded by the Foundation for the NIH and other organizations - we hope to hear the results soon. We continue to look for further funding opportunities to help support our cause

    A few ways in which your funds will have continued impact:

    • In partnership with the Orphan Disease Center at the University of Pennsylvania, we will bring together scientists from around the globe to determine the most important research areas with respect to ADLD.  Based on this Think Tank, we will issue a $100,000 grant to a fitting research team after a rigorous application process
    • Creation of an ADLD Clinical Care Network that develops expertise in the care of the disease (initially 5-7 doctors across the globe)
    • Patient Engagement and Registry efforts (inclusive of outreach, software license fees, consulting fees, etc.)
    • Funding genetic and clinical research teams when needed 

    Thank you again for your continued support – we could not do this critical work without you by our side. We always appreciate hearing from our supporters – if you have any questions or ideas on ways to further our efforts, please don’t hesitate to reach out.


    ADLD Center Board

Name Donate Amount Date
T. S. $300.00 January 2023
I. S. $75.00 January 2023
Karen Patterson $100.00 January 2023
Andrea Green $100.00 January 2023
C. D. $50.00 January 2023
Anonymous $10,000.00 January 2023
D. K. $500.00 January 2023
D. K. $500.00 January 2023
Jody Komae $50.00 January 2023
A. S. $2,000.00 January 2023
RAVITA S $3,000.00 December 2022
S. B. $7,500.00 December 2022
Anonymous $6,500.00 December 2022
J. K. $10,000.00 December 2022
Ken & Anne Kao $250.00 December 2022
Lavanya Yohanathan $300.00 December 2022
Rubin Paul Singh $250.00 December 2022
Beaumont Multi-Organ Transplant Program $400.00 December 2022
I. S. $75.00 December 2022
T. S. $300.00 December 2022
Navjeet Randhawa $50.00 December 2022
Sarah Grutza $50.00 December 2022
Amanda Melymuka $100.00 December 2022
Manpriya & Sarav Paul $100.00 December 2022
Begum Akay $50.00 December 2022
Amy Hale $20.00 December 2022
Liza, Emily, Kristen, and Noelle BHS Teacher Leaders $100.00 December 2022
Jon O'Toole $75.00 December 2022
Arvinder Dhalla $200.00 December 2022
Anonymous $15,000.00 December 2022
S. K. $2,500.00 December 2022
Rinku&Rohit Arora $100.00 December 2022
L. K. $25.00 November 2022
Damanpreet Bedi $7,500.00 November 2022
madhu singh $100.00 November 2022
Jody Komae $1,000.00 November 2022
J. K. $50.00 November 2022
Match Fund $150.00 November 2022
Tejasvir Singh $300.00 November 2022
Tejasvir Singh $2,500.00 November 2022
Match Fund $150.00 November 2022
Anonymous $75.00 November 2022
Match Fund $400.00 November 2022
Ravi Singh $400.00 November 2022
Match Fund $400.00 November 2022
Anonymous $400.00 November 2022
Anonymous $400.00 November 2022
Match Fund $400.00 November 2022
Anonymous $400.00 November 2022
Match Fund $400.00 November 2022
Anonymous $400.00 November 2022
Match Fund $400.00 November 2022
S. B. $400.00 November 2022
Match Fund $200.00 November 2022
Anonymous $200.00 November 2022
J. K. $50.00 October 2022
J. K. $50.00 September 2022
J. K. $50.00 August 2022
Amarjit Singh $2,000.00 August 2022
A. M. $2,500.00 August 2022
J. K. $50.00 July 2022
DAF DVN Administrator $1,000.00 July 2022
Sikh Community Fund $5,000.00 July 2022
Amrik Singh $1,000.00 July 2022
M. D. $250.00 June 2022
J. K. $50.00 June 2022
Amrit & Apar $1,000.00 June 2022
Bhajneet Singh $1,000.00 June 2022
Mandeep Singh $100.00 June 2022
Gurjot Singh $500.00 June 2022
J. K. $50.00 May 2022
Sudarsh Oberoi $5,000.00 May 2022
J. K. $50.00 April 2022
Ashima Agarwal $50.00 April 2022
Jody Komae $50.00 March 2022
Jody Komae $50.00 March 2022
Tilu Arora $75.00 March 2022
Manmeet Loomba $50.00 March 2022
Sonali Jain $100.00 March 2022
Preeti Chadha $100.00 March 2022
Monika Gupta $100.00 March 2022
Mansi Goyal $100.00 March 2022
Gurpreet Ahluwalia $50.00 March 2022
Maneesha Chandra $100.00 March 2022
Anisha Gupta $200.00 March 2022
Arshinder Kaur $50.00 March 2022
Mohit Kohli $5,000.00 March 2022
Anonymous $50.00 March 2022
Princy Gupta $100.00 March 2022
Renu Bhatia $250.00 March 2022
Anonymous $50.00 March 2022
Monal & Vatsal Sonecha $50.00 March 2022
Kamal Kaur $85.00 March 2022
A. C. $51.00 March 2022
Anonymous $200.00 March 2022
Manmeet Loomba $50.00 March 2022
Ritu and Mandeep Ghumman $1,500.00 March 2022
Anonymous $100.00 March 2022
Bharat & Bhargavi GOHIL $3,000.00 March 2022
Bhargavi, Nidhi, Babita, Akshi, PriyaM, PriyaG, Zankar, Trupti, Valeh Gohil, Khatri, Randhawa, Jain, Merani, Gogte, Kapadia, Thakkar, Yazdi $900.00 March 2022
Gita Banga $2,500.00 March 2022
Shirin Nijhawan $100.00 February 2022
DAF DVN Administrator $3,000.00 February 2022
Inder Monga $10,000.00 January 2022
Ravita S $3,000.00 December 2021
H. B. $10,000.00 December 2021
S. S. $3,000.00 December 2021
Anonymous $2,000.00 December 2021
Charles Lam $5,000.00 December 2021
Surinder Bedi $5,000.00 December 2021
S. K. $2,500.00 December 2021
Vikram & Komal Singh $3,000.00 December 2021
Anonymous $5,000.00 December 2021
Jaspal Kohli $10,000.00 December 2021
Nicole Bedi $10,000.00 December 2021
Inderpal Singh $15,000.00 December 2021
Inderpal Singh $10,000.00 December 2021