Twin Run: Dutch Dad Raising Awareness Of Twin Complications
Starting in Hoorn at the Dijklander Ziekenhuis, Mart will run to Alkmaar via the Noordwest Ziekenhuisgroep and then onto the LUMC in Leiden between the 8th and 10th October this year. He aims to raise funds for vital twin research, supported by the TAPS Support Foundation.
"The route symbolizes the journey my sons have made past three hospitals. The path will be revisiting memories through the time of an anxious, high-risk pregnancy. The final destination is the LUMC, the hospital where they were born. By acting appropriately, consulting well, and screening frequently, the fetal treatment team has ensured that we can now enjoy our sons. Our gratitude is great, and in collaboration with the TAPS Support Foundation, we have found a direct way to give 'something' in return for the great work they do and to bring even more high-risk pregnancies to a successful conclusion.” said Mart Smit.
"We are closing a turbulent period with this run, and we hope to open new doors with essential donations."
The biggest issue with twin research is a lack of awareness about the complications of twins and a lack of funding to continue rare disease research. Twin complications are overshadowed by the rarity and joy of having twins. This means that often the rare complications are overlooked, and awareness of diagnosis and treatment is vital.
"Identical twins only occur in 2% of all pregnancies; in total, about a third of these pregnancies are complicated by TTS, TAPS, sFGR, and TRAP. These complications can have severe consequences in both the short and long term. It is of utmost importance for both these children and their families to improve the outcomes of these pregnancies. There are no significant financial funds for these disorders, which means that the money collected is extra essential to continue research."– Dr Femke Slaghekke, Maternal Fetal Medicine Specialist, LUMC Leiden.
Dr. Joanne Verweij, also of the LUMC, adds: "We must continue to research twin complications. With the money raised, we can do this. A fundraising initiative initiated by a patient/parent is the best incentive a research group can receive. Parents have experienced first-hand what the knowledge gaps still are and what these knowledge gaps mean in healthcare. They see how important research is. With this money, we can carry out necessary new research and learn more so we can better inform and treat future parents. "
Within the Netherlands, the LUMC is the primary referral center for twin complications like twin-twin transfusion syndrome. They also have made many advances and discoveries in twin research, such as naming and being world experts in Twin Anemia Polycythemia Sequence, developing life-saving laser therapies.
Performing over 900 life-saving laser surgeries in the past 20 years, and with a 24-7 referral center with leading experts available for consultation, the LUMC saves the lives of twins across the Netherlands. Their expertise and innovation are recognized across Europe and the world. They are sought-after experts in their field, consulting worldwide on complex twin problems.
Over three days, and 150 kilometers, Mart will use his epic run to raise vital funds to continue research into twins and their unique complications and raise awareness.
For more information, visit twinrun.nl or email firstname.lastname@example.org
The TAPS Support Foundation
Aalbessenstraat 7 1326HS Almere
+31 629 841 203
Formed in 2020, the TAPS Support Foundation raises awareness of Twin Anemia Polycythemia Sequence. It supports families diagnosed with this rare disease. They also support research into TAPS and related conditions affecting twins through fundraising and connecting researchers with patients. In their first year, they have already been integral in campaigning for change to screening protocols for twins and raising awareness of the unique complications faced by parents of multiples. Visit stichtingtapssupport.com for more information, or call +31 629 841 203, or email Stephanie Ernst at email@example.com
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