The Gift of Hope and Paving Pathways
Dear Community Members,
 
As we reflect on the past year, we feel an overwhelming sense of pride for the incredible accomplishments we've achieved together as a CLA community. From groundbreaking research advancements to strengthening our support networks, we've come a long way. Our collective dedication and unwavering commitment have made a significant impact on the lives of those affected by Complex Lymphatic Anomalies (CLAs). These achievements inspire us to look ahead with hope and determination, knowing that we can continue to make a profound difference in the coming year.  

I want to express my gratitude for your continued support of our mission to champion those affected by CLAs. LGDA remains committed to bringing hope and progress to these rare diseases, thanks to friends and advocates like you. 

Your generous contributions have been instrumental in fostering groundbreaking research and nurturing a supportive community for patients, families, and medical professionals. 

As we stand on the cusp of another year, I extend a heartfelt request for your continued support. Our mission comprises four vital goals: 
  • Fund groundbreaking research for CLAs. 
  • Create a strong support network connecting patients, families, and experts. 
  • Spotlight inspiring stories within our community to raise awareness and empower others. 
  • Provide hope through generous giving to transform lives and futures. 
 
In these times of rapid change and uncertainty, the importance of our work is evident, and the need for support is urgent. Your renewed contribution will not only sustain these life-altering initiatives but also inspire others to join us in championing the cause of those affected by CLAs. 

Your support is a beacon of hope, a commitment to a better tomorrow, and a lifeline for many. Together, we are transforming lives and creating a brighter future for all affected by CLAs.
  
Thank you for being a part of this remarkable journey. 

Warm regards,
 
Michael Kelly, MD, PhD
Executive Director
LGDA
November is National Family Caregivers Month, a time to honor the unsung heroes in our society—family caregivers. These individuals, often unexpectedly thrust into the role, provide crucial support to family members, friends, or loved ones facing health challenges. Their tasks range from assisting with daily activities to providing intensive emotional support and medical care. The emotional toll of caregiving, especially for those caring for a child with a rare disease, can be overwhelming, transforming relationships and personal aspirations. Family caregivers frequently juggle their caregiving responsibilities with work and personal well-being, leading to physical and emotional exhaustion.

Despite these challenges, they remain the backbone of our healthcare system, their dedication and love invaluable to those they care for. As we celebrate National Family Caregivers Month, it's crucial to recognize these caregivers' sacrifices and provide them with necessary support and respite.

To learn more about the extraordinary role of family caregivers and the challenges they face, read the full article in this insightful blog post.
Advocating for the Patient Voice among Friends
David Williams, Chair of the General Board and interim Director of LGD Alliance Europe, recently shared his experiences from moderating the Patient Voice Sessions at the International Scientific Conference held in Dallas, Texas in the US. Representing individuals living with CLAs and their families, David highlighted the importance of the patient voice in scientific discussions, emphasizing the value of collaboration and shared knowledge in advancing patient-centered care. The conference, hosted by the LGDA , LMI, and LGD Alliance Europe, brought together a diverse group of clinicians, scientists, and researchers to address the challenges of diagnosing and treating rare conditions like CLAs. David expressed his gratitude for the opportunity to represent the patient community and underscored the positive impact of collective efforts in improving the future for those living with CLAs.


Photo: Starting from left, Rene Hagerling, Miikka Vikkula, Willemijn Klein, Hans Schoofs, and David Williams.
Our Impact
  • 2: # of mental health webinars for the LGDA community
  • 9: # of languages available for our Patient Guidebook
  • 38: # of new members in our two online support groups – increase of 52%
  • 521: # of people enrolled in our Patient Registry – increase of 11%
  • 1,352: # of people on our newsletter list
  • 3,482: # of social media followers – increase of 15%
  • 8,154: # of website visitors
  • $25,000: amount donated for the Alfie Milne Young Investigator Award
  • $60,657 raised for Million Dollar Bike Ride (including matching funds from University of Pennsylvania)

Be the Hope for Tomorrow
Giving Tuesday is November 28 - we would love your support in receiving donations this year. Please consider sharing how the LGDA has helped you or your loved one face the hardships of living with a CLA via social media, text or email so we can make this Giving Tuesday our most successful yet! You can download a QR code or a link to our website to make giving quick and easy.

Download social media image - Facebook, Instagram

Meet Kevin and Jen from Ontario, Canada!

Join us in welcoming this incredible couple who are sharing their heartfelt journey as caregivers to a child with a complex lymphatic anomaly. Their story is nothing short of inspiring, shedding light on the highs and lows of their challenging path.

Their story highlights the vital need for mental health support, not just for the children but also for the parents who carry a tremendous burden. It emphasizes the importance of community and understanding when dealing with rare diseases.

"It's very hard to find a balance between family, work, illness, and appointments. When the disease flares, all of our resources go to helping our son."


Join a CLA Educational Material Design Workshop and Share Your Insights on Oral Side Effects!

We're excited to invite adults with complex lymphatic anomalies (CLAs) and parents of pediatric patients to participate in up to three pivotal workshops aimed at shaping educational materials for patients and their families. This is a unique opportunity for you to provide valuable feedback and help us tailor resources specifically for the CLA community. Your insights are crucial in making these materials both informative and relevant. These workshops are exclusively for participants in the United States. For more details about the workshops and to express your interest, please download the flyer CLA Educational Material Design Workshop. Have any questions? Feel free to reach out to us at siskb@wustl.edu.

Additionally, we are gathering insights on oral side effects associated with lymphatic disorders. If you are a patient or a parent of a patient experiencing these effects, we encourage you to complete a brief survey. Your experiences are valuable in enhancing our understanding and support for those dealing with these challenges. To take part in this survey and to download more information, please visit Oral Side Effects Survey. If you have any questions or need further information, contact Dr. Aparna Bhat at abhat505@uw.edu.
Raise CLA Awareness
The Patient and Family Guidebook is a great way to raise CLA awareness. Share it with your network including family and friends. Don't forget your child's teachers. It's available in 9 languages - English, Chinese, Spanish (Europe), Spanish (Latin America), French, Italian, German, Portuguese (Europe), and Portuguese (Brazil).

Together, we can raise awareness in our communities.

LGDA's New
Educational Tool

This new educational tool, designed like a prescription pad and introduced by the LGDA, features a QR code that provides quick access to a wealth of resources. It's an efficient way for patients and families to access essential information, significantly aiding in navigating the complex world of healthcare.

It's more than just paper; it's a bridge connecting medical professionals with their patients, ensuring that important information is always at their fingertips.

Doctors and centers focusing on complex lymphatic anomalies can request copies of this tool by contacting LGDA at info@lgdalliance.org.

The LGDA is dedicated to building and expanding resources for vascular centers, aiming to simplify the process of community outreach. This mission relies on the support of generous donors. By considering a donation, you can contribute to the development of more tools and resources, directly impacting the lives of those affected by CLAs.

To donate, visit bit.ly/GiveHopeLGDA and help the LGDA in its endeavor to empower patients and medical professionals alike.

With each scan and each donation, we move closer to a world where information and support are readily available to all in need. The LGDA's educational tool is a symbol of hope and empowerment in the CLA community.
2024 Calendar of Events

Mark Your Calendars!

Start 2024 in partnership with us! Please mark these important dates on your calendar and ask us how you can get involved in these events. We are always in need of volunteers looking to bring our community together and this year – maybe you want to host a regional event in support of the LGDA!

  • Jan 4 – Orphan Drug Act Anniversary
  • Feb 29 - Rare Disease Day
  • Apr 10 – National Siblings Day (US)
  • May – Mental Health Awareness Month
  • May 26 - LGD Awareness Day
  • May 31 - National Siblings Day (Europe)
  • June 8 - Million Dollar Bike Ride
  • July 26 – National Disability Independence Day
  • November – National Family Caregivers Month
  • December 3 – Giving Tuesday

Our next newsletter will be sent in February 2023.